I'm from Indonesia. I want to bring my son seeing my son kesingapore Indonesian doctor convicted of thalassemia major but after my son was only a DNA test alpha thalassemia hb 1gen but every month my son drop and spleen and liver enlarged if you can give info doctor who can treat my child in the hospital NUH singapore thanks for the info
THALASSEMIA N ME
Subtitle
Contact Me - Message | Comment
Message - Above each message, is the date in Day/Month/Year order
Comment:
Hi, need some advice on how to take wheatgrass.
From what I've read, it seems the best time to take wheatgrass juice (fresh or powdered or ready mixed) is in the morning, on empty stomach.
But that is also the time to take Exjade, in the morning on empty stomach also.
Which should be consumed first in this case? Or can Exjade be taken with wheatgrass juice?
Thanks in advance.
From what I've read, it seems the best time to take wheatgrass juice (fresh or powdered or ready mixed) is in the morning, on empty stomach.
But that is also the time to take Exjade, in the morning on empty stomach also.
Which should be consumed first in this case? Or can Exjade be taken with wheatgrass juice?
Thanks in advance.
24 May 2022
Comment:
Hi Jack,
Just came across your post listed a few years back in thalassemia and friends.com. Had a look at your site, looks like the blog section last posting was a few years back. How are you doing? Please reply before i post further questions to you. Thanks.
Just came across your post listed a few years back in thalassemia and friends.com. Had a look at your site, looks like the blog section last posting was a few years back. How are you doing? Please reply before i post further questions to you. Thanks.
24 July 2021
Comment:
Tôi mu¿n mua máy
06 July 2021
Comment:
Im looking for thalaset in Jordon, for my 2 younger siblings, its really expensive, i was looking for a good price to buy, any recommendation
30 June 2021
Comment:
Hello Dear,
Hope you are fine. I just found your website on Google. I am glad to see the digital pump for desfral injection. I am from Islamabad and want to buy this digital pump. Kindly share some information with me in this regard.
Thanking you in anticipation,
Waiting to hear from you
11 May 2021
Comment:
Sir I want thalaset needle in india plss let me know how can I get
28 April 2021
Comment:
Dear Team Thalassemia N Me ,
Greetings of the day! Hoping that you are doing well.
This is in reference to our previous mail about a collaboration for establishing a logo (common symbolic representation) that would provide representation to the Thalassemia Community globally. We all agree and recognize a $ or £ sign on a currency, and the same is true with a sign of Fire on a Petrol tanker ahead of us i.e. to say if a logo (symbol) makes anything more powerful and visible, why is there no logo so far for Thalassemia - a dreaded disorder, which can be easily prevented? We believe that this initiative will help us to eradicate Thalassemia with our combined efforts made across all the continents. If you have any queries regarding the same, we would be more than happy to take this discussion forward in a virtual meeting. Looking forward to your positive response at the earliest.
Let's join hands to fight Thalassemia in unison by taking a fast action to reach a consensus on a Logo for Thalassemia as it has been done for Cancer, Diabetes and Hepatitis and other dreaded disorders. Stay safe and take care!
05 April 2021
Comment:
05 April 2021
Comment:
Dear Mr Goh,
We are writing from B.Braun Singapore, one of the leading medical device suppliers here, to introduce to the Society the Micrel Thalapump 20, a syringe driver designed specifically for the infusion of Desferal (see brochure attached).
The Micrel Thalapump 20 is manufactured by Micrel Medical, Greece, and is a class C medical device registered with the Health Sciences Authority Singapore (HAS) – registration number DE0501609 (see screenshot below).
The Thalapump 20 is simple to use, light weight (220g), long battery life (approx. 2 months with 50mm per day infusion) and can be used with many syringe brands (B.Braun, BD, Terumo, etc) and sizes (10ml to 60ml) – which makes it convenient and economical for users.
This product is also priced very competitively and users will have support from a local application and technical service team.
Please let us know if we can have an opportunity to introduce the pump to the Society. My contact number is 96680547.
Look forward to hearing from you.
19 November 2020
Comment:
18 November 2020
Comment:
Hello there,
It's nice to hear that you are shopping in the market.
This is a supplier from China. The company mainly deals in milking machines and milking machine accessories. Our company has ten years of foreign trade experience and has foreign trade contacts in dozens of countries. Hope to find a way to cooperate with you!
Please add the required product information and pictures of different packages in the attachment.
Contact: Chen Jingshuai
Address: , Boshan District, Zibo City, Shandong Province
Phone: +8613853347823
Email: 5943288@qq.com
Thank you and sincere regards.
01 August 2020
Comment:
Hi! I am a father of a thalassaemia major daughter aged 4, and I would like to understand more about adult like with thalassaemia major. Hope I could speak with you. Do email me or call me at _______. Thank you.
04 July 2020
Comment:
24 June 2020
Comment:
Attention please !I am urgently in need of Kidney donors with the sum of $500,000.00,WHATSAP: +91 91082 56518
Email: ( jainhospitalcare@gmail.com ) Thank you
Please Share !
05 June 2020
Comment:
Hi Chun Hui,
Thank you so much for helping us with this. We really appreciate it!
Singapore Stories is a weeknight chat show on cna938 from 9:10pm, where the host Eugene Loh uncovers the stories and passions of everyday people. Eugene is looking to do a pre-recorded interview with you on 12 June 4-5pm, to be aired on the same day. It'll be done via Zoom and they'll send over the Zoom link to you via text before the interview.
It’s essentially a human-interest piece, built on intimate and spontaneous conversation, and a gradual peeling away of the layers of the interviewee to reveal what has shaped them and what makes them tick.
Areas usually covered (but not limited to) include their childhood, growing up years, fondest memories, influences and motivations, career, passions and interests, relationships, travels, milestones, challenges, achievements, and other little known facets and interesting anecdotes.
Areas usually covered (but not limited to) include their childhood, growing up years, fondest memories, influences and motivations, career, passions and interests, relationships, travels, milestones, challenges, achievements, and other little known facets and interesting anecdotes.
As it is World Blood Donor Day, we would like you to focus on the following.
We will also need your help to provide brief answers for Eugene's background so he can ask the questions on-air. Could you please send over your input by next Wednesday?
- Childhood (covering the time you were first diagnosed with thalassemia)
- Growing up years / family
- Fond memories
- Challenges (covering regular transfusions/ need for blood/ appreciation to blood donors)
- Motivations and milestones
- Passions and interest (Your good work on thalassemia education / engagement with other patients)
- Your work, and COVID-19 impact
- And any other areas you'd like to touch on
Take good care!
17 May 2020
Comment:
Thank you for accepting my request to join your association.
Since we have a lot of experience with Sickle Cell Anemia which is very closely related in many aspects to Thalassemia I invite you to read our 23 page report.
As you can read, to enable us to prepare a very economical and efficient protocol I initially tested ( actually this was all done at distance- in Switzerland where my laboratory was located and for children in Togo)15 persons individually, measuring the resonance with what we had available at that time (Now e have a lot more advanced material at our disposal).
To "tailor make" a personalized treatment we have 2 ALTERNATIVES with obviously corresponding costs.
A. We test the resonance of all the frequencies we have for each component of the blood as well as all our iron combinations.
The professional fee is 1.000 Euros. The cost for the remedies is extra annd can vary according to the extent of frequencies in resonance. Usually there will be 4 prescriptions of 3 months each. Already after 5 weeks of initiating the treatment you can expect notable improvements like less need for transfusions with periods in between increasingly longer. After this one year treatment 95 % of recipients will no longer need further treatment. We might however prescribe a minor maintenance at very minimal cost like 10 to 30 euros a month. There aare NEVER any side effects with us.
B. Testing the above mentioned frequencies and essences PLUS our FULL RANGE of 1.500 remedies.
Please read "Omnium Salus" in the Therapeutic Index.
The professional fee is 1.999 € for 5 x 3 month programs ( more remedies are also taken each day then in Alternative A)-there can be 250 € more for each additional 3 month prescriptions-never more than 3 additional prescriptions but this depends on each individual case.. With this approach we take everything into consideration, we "set the clock right". The cost of the remedies is additional and will amount to approximately 1.500 € over the 15 month period.
Having an exceptional command of medical astrology since 45 years we also look at the Horoscope of the client and prescribe essences of Gems and Minerals that are related to the planets that are well aspected in the birth chart. This work is " 2nd to none in the world".
By treating a minimum of 20 persons with Alternative A and lets say 10 with Aternative B we will be able to organize a very efficient and very economical protocol derived from the recurring information of the major individual frequencies and essences needed most often in each case.
You can search the whole world and will never find someone capable of doing a portion of what I do. The agregate amount of knowledge and Know how I have gathered in a lifetime is 2 nd to none. Since I am sensitive I do this at distance.
If you find at least 3 people wanting Option A and at least 32 persons wanting Option B or alternatively you find 5 or 6 people wanting Option A I am willing to come to Singapore to give a lecture to
your group ( this would have to be planned at least 4 to 6 weeks after the beginning of those individual treatments so that the persons concerned can show their recent analysis and testify about their improved condition at time of the lecture.
At 76, I am not looking for extra work- believe me I am still active full time. My mother at 100 years old was still in excellent shape and she lived to be 103 and a half.
If the following is helpful for you to be more enthusiastic I can suggest a Skype conversaition to discuss your horoscope so tat I tell you what I see in it and why you have the Thalassemia problem.. The fee is 150 euros for one hour or 90 euros for 30 minutes . Payable by Western Union before the consutation. As a gesture from me this amount can be deducted from either the fee of Alternative A or B you would choose.
Allopathic medicine does NOT heal Thalassemia, and the dangers of repeated transfusions are not negligible. Why not working on the symptom AND the cause- the energetic unbalance.
As you know in Traditional Chinese Medicine Disease is an UNBALANCE of Energy.
By the way I have developed also a Meridian set to treat the various meridians.
Hoping that this has been informative for you, I wish you an inspired reading and look forward to hearing from you.
Kindest regards
19 March 2020
Comment:
14 March 2020
Comment:
I have Thalasemia affected child and every 12 days intervals need to blood transfusion through blood filter transfusion set. how can available this set?
04 March 2020
Comment:
My mission in life is to help people with health issues to get back optimal health. I have good news for you because I know of a live stem cell therapy which can help you with this disease.
We have a free buffet talk tomorrow, Thu, 5 Mar 2020 on this stem cell therapy at 7pm at Link @ Ang Mo Kio, Ang Mo Kio St 62, #01-02, Singapore.
If you are keen, please pm me by 12pm tomorrow, so that I can reserve a seat for you. You may bring friend or relative, but you need to let me know how many tickets you need, so that I can arrange.
You may call me at hp: 83889008. Please provide your contact number so that I can liaise with you, eg how to go to the venue, etc.
I hope to hear from you asap.
Towards Optimal Health!
Thanks.
22 October 2019
Comment:
Hi Goh Chun Hui,
Hope you are well. Actually I am a thalassaemia major patient from India who is willing to do his masters from Singapore. But due to thalassaemia major, I am dependent on blood transfusions and iron chelation medicines, therefore I would like to know the cost associated with blood transfusions and chelation medicines in Singapore. In addition to that is there any kind of insurance for international students that cover those costs.
I would be really helpful if you help me with the above queries so that I can start applying in Singapore universities to fulfil my dream of doing masters from there.
Thanks
I would be really helpful if you help me with the above queries so that I can start applying in Singapore universities to fulfil my dream of doing masters from there.
Thanks
22 October 2019
Comment:
Dear Mr. Jack Goh,
My name is ________ and I am writing to you on behalf of my Final Year Project group from the Wee Kim Wee School of Communication and Information, Nanyang Technological University.
As part of our project, my three group members and I will be embarking on a health communications campaign which seeks to reduce the prevalence of Thalassemia Major, the severe form of the genetic blood disorder - Thalassemia, in Singapore by increasing the uptake of Thalassemia screening among prospective parents.
Our campaign – Thala-SIMI-AH?: A Minor issue for you, A Major problem for your kids – will address the importance of Thalassemia screening in helping to identify individuals with Thalassemia Minor, who may be silent carriers of Thalassemia trait, and reducing their risk of having children with Thalassemia Major. The campaign will strive to raise awareness about Thalassemia in its two main forms – Minor and Major – among prospective parents and encourage them to go for Thalassemia screening so that they may have the opportunity to make more informed choices in terms of family planning that may contribute to a decline in the rate of infants born with Thalassemia Major.
We admire your courage and dedication in raising awareness about Thalassemia in Singapore through your own experiences via your platform - 'Thalassemia N Me' - and we are writing to request your assistance in providing us with greater insight into what it is like to grow up and live with Thalassemia Major and the possible challenges (physical, emotional, psychological, social, financial etc.) that come with it. The knowledge and experiences that you may share with us would contribute greatly in helping inform our campaign strategy in helping inform our campaign strategy and tactics to guide our campaign to success in meeting our goal and our objectives.
Your support will be invaluable in helping our campaign achieve its goal of increasing the uptake of Thalassemia screening among Singaporean young adult couples who intend to have children and, in turn, contributing to a reduction in the prevalence of Thalassemia Major in Singapore.
Thank you for your kind consideration and we look forward to a great partnership with you!
Kind Regards,
17 October 2019
Comment:
I hope you are well! I found this page and was hoping somebody could help me out. I am looking to relocate to Singapore early next year, and would love to make sure that I have a contact to help me set up my monthly transfusions in Singapore.
I will be interviewing with companies that provide medical insurance that covers pre-existing conditions, so will sort this part out on my end however just want to make sure I have a contact for when I am trying to get into the Thalassemia program.
Please let me know if you can help me in any way.
Thanks!
01 October 2019
Comment:
"How can I get this cup
I need one for my som"
09 September 2019
Comment:
I need it emergency. ..please how can i bay this...?
02 August 2019
Comment:
28 July 2019
Comment:
Hey dear please tell me that how to maintain the spleen size....And tell me that what is the safe level of iron in body
Which number you use veinflon..
24 July 2019
Comment:
I ask to you that in thalassemia major all guys are fat and healthy even not I am....
Can I.take the diet in chicken and fat item can.include it but it harm the health that fear I not eat at all....and in thalassemia all patient facial structure are fair and good ....how to remove our blackness in faces.....
And tell me which is oral iron chelator is good that work more and Effective
20 July 2019
Comment:
Hy namaste I told you that what is the best iron chelator to remove access iron.and how to remove iron fast in facial structure and body ......
What you are taking iron Christie to chelate iron remove from the body
19 July 2019
Comment:
Sir i want to ask that my body will grow and development will very slow....but give me some tips to. Grow beard I even 20yrs age please tell me how i grow beard and can.i start gym.....and healthy food what to eat without contain iron.
Comment:
Sir i want to ask that my body will grow and development will very slow....but give me some tips to. Grow beard I even 20yrs age please tell me how i grow beard and can.i start gym.....and healthy food what to eat without contain iron.
18 July 2019
Comment:
How to maintain ourselve and living healthy lifestyle......?????
Comment:
How to maintain ourselve and living healthy lifestyle......?????
10 July 2019
Comment:
I have to buy the bio r filter at cheap price please tell me the price of that...
22 January 2019
Comment:
Hi,
My name is Seth Johann. We are a content marketing agency and your blog site is one of the sites that we are interested to work with.
1. I would like to request for do follow back-links.
My name is Seth Johann. We are a content marketing agency and your blog site is one of the sites that we are interested to work with.
1. I would like to request for do follow back-links.
2. We are looking for a long term relationship where our main responsibility will be submitting unique articles with respect to the niche of your website.
3. I would also like to let you know that you don’t have to include sponsored tags with any of our pieces
3. I would also like to let you know that you don’t have to include sponsored tags with any of our pieces
4. We shall be making payments through PayPal or Payoneer depending on what you charge for posting our article on your site.
5. If you are considering our proposal, reach us via email so that we can begin making the necessary preparations.
Regard,
Seth Johann
22 November 2018
Comment:
Hello, Sir, This is Phoebe from Epower China, professional manufacturer for thalassemia syringe pumps, do hope our desferal pump could help more and more thalassemia patients
Could you pls introduce our desferal pump to more patients?
05 November 2018
Comment:
Hi Mr Goh ,
I do not know if is convenience to share your experience consuming jadenu .
The side effect occurring and if it helps to reduce iron.
Thank you
I do not know if is convenience to share your experience consuming jadenu .
The side effect occurring and if it helps to reduce iron.
Thank you
21 September 2018
Comment:
My name is _____ . it give me a great pleasure to write you i was browsing when i came across your contact and something touched me to contact you
18 September 2018
Comment:
11 September 2018
Comment:
my brother thalassemia major patient plzzz help me hedroxiyore
my brother thalassemia major patient plzzz help me hedroxiyore
05 September 2018
Comment:
Hi,
I was just dropping in a quick line to know, if I could send some great article ideas your way for a guest post at your website ?
If you like my suggested ideas, I can then provide you high-quality FREE CONTENT/ARTICLE. In return, I would expect just a favor of a backlink from within the main body of the article.
Do let me know if I can interest you with some great topic ideas?
Best Regards,
12 August 2018
Comment:
Dear Sir/Madam,
We are Legal Job Consultant company agency based here in Canada,
right now we are deploying workers to Canada for HOTEL SERVICES and
OFFSHORE JOBS. Please
let us know if you have skilled and unskilled workers.
BELOW HERE ARE THE AVAILABLE OPPORTUNITIES FOR OUR HOTEL SERVICES JOBS, OFFSHORE JOBS, AND RESTAURANT JOBS:
HOTEL SERVICES: SKILLED AND UNSKILLED
Manager, Fish packing, cleaners, storekeeper, Walter, waitress, room
service, drivers, truck drivers, supervisors, securities, assist. admin,
secretary,
cashier drivers, plumbers, cook and bakery in all kind of diet. etc...
OFFSHORE JOBS: SKILLED AND UNSKILLED
maintenance men, carpenters, pipe fitters, roofers, cleaners, General
workers, Fish Packers, Material Handlers, Metal fabricators, General
laborers, mine
workers, millwrights, welders. etc...
RESTAURANT JOBS: SKILLED AND UNSKILLED
Baker, Banquet manager, Bartender, Beverage manager, Broiler cook, Bus person,Catering
manager, Counter server, Dining room manager, Executive chef, Expediter,
Food and beverage director, Foodservice directory (health care),
Fry/sauté
cook, General manager, Human resources manager, Kitchen manager, Maître
d'hotel, Pantry cook, Pastry chef, Public relations manager, Server,
Soup and sauce
cook, Sous chef, Wine steward. etc...
TERMS AND CONDITIONS:
1. Accommodation - Provided.
2. Ticket - Provided (FOR FREE)
3. Medical - Provided.
4. Transportation - Provided.
5. Working hours - 8a.m-4p.m [Mon-Sat]
6. Vacation - 28.5 days every year
7. Salary - Cash $25 per hour for unskilled,$36 for skilled workers.
8. Contract - 2 years.
9. Extra time - Ca$18per hour
10.Insurance & Pension - According to laws.
11.Other Benefits - Family status, group benefit and other fringe benefits.
Reply to the following person for further communication:
7489 Place des Pétunias
Ville de Québec QC
G1G 3T2 Canada.
E-mail | sammayson44@gmail.com
Skype name: jobspecialist1
Facilitating the legal admission of professionals, business persons, unskilled and skilled workers.
Comment:
Dear Sir/Madam,
We are Legal Job Consultant company agency based here in Canada, right now we are deploying workers to Canada for HOTEL SERVICES and OFFSHORE JOBS. Please let us know if you have skilled and unskilled workers.
BELOW HERE ARE THE AVAILABLE OPPORTUNITIES FOR OUR HOTEL SERVICES JOBS, OFFSHORE JOBS, AND RESTAURANT JOBS:
HOTEL SERVICES: SKILLED AND UNSKILLED
Manager, Fish packing, cleaners, storekeeper, Walter, waitress, room service, drivers, truck drivers, supervisors, securities, assist. admin, secretary, cashier drivers, plumbers, cook and bakery in all kind of diet. etc...
OFFSHORE JOBS: SKILLED AND UNSKILLED
maintenance men, carpenters, pipe fitters, roofers, cleaners, General workers, Fish Packers, Material Handlers, Metal fabricators, General laborers, mine workers, millwrights, welders. etc...
RESTAURANT JOBS: SKILLED AND UNSKILLED
Baker, Banquet manager, Bartender, Beverage manager, Broiler cook, Bus person,Catering
manager, Counter server, Dining room manager, Executive chef, Expediter,
Food and beverage director, Foodservice directory (health care),
Fry/sauté
cook, General manager, Human resources manager, Kitchen manager, Maître
d'hotel, Pantry cook, Pastry chef, Public relations manager, Server,
Soup and sauce
cook, Sous chef, Wine steward. etc...
TERMS AND CONDITIONS:
1. Accommodation - Provided.
2. Ticket - Provided (FOR FREE)
3. Medical - Provided.
4. Transportation - Provided.
5. Working hours - 8a.m-4p.m [Mon-Sat]
6. Vacation - 28.5 days every year
7. Salary - Cash $25 per hour for unskilled,$36 for skilled workers.
8. Contract - 2 years.
9. Extra time - Ca$18per hour
10.Insurance & Pension - According to laws.
11.Other Benefits - Family status, group benefit and other fringe benefits.
Reply to the following person for further communication:
7489 Place des Pétunias
Ville de Québec QC
G1G 3T2 Canada.
E-mail | sammayson44@gmail.com
Skype name: jobspecialist1
Facilitating the legal admission of professionals, business persons, unskilled and skilled workers.
10 August 2018
Comment:
Comment:
HELLO HOW ARE YOU
i see your video in your youtube channel (The Correct Method of Taking Exjade)
my mother have High iron in blood so
can
you help me
26 July 2018
Comment:
Comment:
prem singh
09928661516
09928661516
25 June 2018
Comment:
Comment:
Dear Sir/Madam, My daughter is a Thalassemia major patient. Her life
fully depends upon blood transfusion and lots of life savings medicine.
Bone Marrow Transplant is the curative treatment for her to cure from
the fatal disease.presently she is under treatment at Tata medical
Kolkata.we have been able to find 10/10 highest match donor for her
transplant.25 lacs Rupees required for her treatment. All medical
documents are available.we are very poor.unable to arrange that such
amount. Kindly stand by my miserable and helpless family. Kindly save my
daughter's for ylife..Waitingour positive response at the
earliest.Thanks & regards Tarun Kumar Ghosh. Mob-+918967694830.
20 June 2018
Comment:
Comment:
Name : Elliot
Message : Good article. I certainly love this site. Keep writing!
Message : Good article. I certainly love this site. Keep writing!
19 June 2018
Comment:
Message : good day
kindly need purchase one machine from crono ambulatory infusion pump can shipment for Saudi Arabia
kindly need purchase one machine from crono ambulatory infusion pump can shipment for Saudi Arabia
14 June 2018
Comment:
Comment:
Hey I need find thalaset Needle in Malaysia near kl. Where I can find that?
10 June 2018
Comment:
Comment:
Thalassemianme Group
Greetings for the day!
I would like to congratulate you for hard work done on your website. However after reviewing it with standard search parameters. It seems you have not updated your website as per recent Google algorithm.
It has become predominantly important to understand how search engines work. With involvement of Rank Brain for search listing by Google. We need to understand if we are in the right track to accommodate these updates.
Unfortunately it seems, your site can not survive upcoming search engine update that includes artificial intelligence for search engine ranking.
Few factors that are going to be considered vital in new update:
1- It?s always content that makes you king in the race, however plagiarism too impacts a lot to ranking.
2- For Google it?s always local first. Hence, pigeon update from Google ensures priority being given to accurate local agencies those are listed correctly.
3- Mobile Friendly and Page speed test from Google adds more cushion to its algorithm. Which ensures a well-structured, error free website should get the reward.
4- Social Media adds value to your brand giving you an option to support your ranking out of Google?s authority.
Now if you have following questions and want to know how can we help then please reply us back with your direct contact number and email address. We will schedule a free consultation with our Google certified expert.
Q-(How to fix crawl issues and how does that impact ranking or traffic, what are the best standard for content, how to be prominent on local search, what is real back link, most importantly how to increase traffic and ranking for better success)
Best Regards,
30 May 2018
Comment:
Comment:
Hi,
My name is Nainil and I'm a freelance strategic marketing consultant.
I would be grateful if you could give me the name and email address of the person in your digital marketing group who is responsible for hiring freelancers.
Sincerely,
Nainil Chheda
+1 (267) 241-3796
My name is Nainil and I'm a freelance strategic marketing consultant.
I would be grateful if you could give me the name and email address of the person in your digital marketing group who is responsible for hiring freelancers.
Sincerely,
Nainil Chheda
+1 (267) 241-3796
26 April 2018
Comment:
I'm from Italy and I'm 38 male, and I'm beta Thal minor (high range of minor).
I was searching for some supplement for my condition. I tried without any success Methylfolate, Vitamin E, and vitamin D, and sometime B complex. No one seems to fix me properly and Hb value it's even less now ! I use to practice endurance sport, but in the last few months it's very difficult to continue for fatigue e soreness. Life in general is more difficult now. I look up into the blog and see that there are some foods that can help thals. I saw the list, and I read about Juicing and so I will ask: is the list you worote a top-down list ? What are the most efficient food/supplement?
Thank you
25 April 2018
Comment:
Hai dan Salam Ceria Goh Chun Hui ..
Sedar tak sedar, tinggal beberapa hari sahaja lagi untuk kita sampai ke bulan Ramadhan.
"Semoga kita dipanjangkan usia agar dapat bertemu bulan Ramadhan pada tahun ini."
Dan seperti biasa, bila tiba bulan Ramadhan nanti, ramai yang akan cuba untuk menjana
pendapatan tambahan atau sampingan dengan cara berniaga.
Kalau Goh Chun Hui ada terfikir untuk buat apa-apa projek sampingan pada bulan Ramadhan
nanti.... inilah waktunya untuk Goh Chun Hui mulakan langkah.
Maklumlah, pada waktu ini, sudah ada beberapa tempat yang akan mula membuka pendaftaran
untuk sewa tapak bagi bazar ramadhan nanti. Lebih-lebih lagi bagi tempat yang HOT! Memang
kena cepat, kalau lambat hantar borang permohonan tapak.. memang melepaslah jawabnya.
Jadi... Goh Chun Hui sudah ada terfikir untuk buat apa-apa projek sampingan?
Jika belum ada.... saya nak cadangkan Goh Chun Hui buat projek BISNES AIR BALANG dan BISNES TUDUNG.
Untuk bacaan lanjut, boleh klik link di bawah.
Bisnes Air Balang >>> Klik Sini
Bisnes Tudung >>> Klik Sini
Baiklah, Goh Chun Hui buat dulu pilihan antara dua tu ya.
Nantikan email dari saya seterusnya tentang kelebihan kedua-dua bisnes tersebut.
15 April 2018
Comment:
One of my patient diagnosed as thalassemia major. He needs financial help for BMT
03 April 2018
Comment:
sir,
i have two twin sisters both are of age 8 years old. both are suffering from thalassemia major our family survives on a very less income of my mother which she earns working as a house maid. But the money she earns is not enough for for our fooding let alone their treatment. we are facing very much problem. please help me how to get financial help for their treatment.
22 March 2018
Comment:
I need Thalaset 29g Infusion Sets.
Do you ship overseas?
13 March 2018
Comment:
kindly contact me 03345342715 for purchase of desphrol infusion pump
22 February 2018Thank you for the important work you're doing for the thalassemia
community. I wanted to reach out and share with you a new initiative I'm
working on. As I?m sure you know, social support is critical for
everyone, particularly for people with rare diseases. I have been
working with Curatio to develop a mobile app for the thalassemia
community that helps people privately connect to each other and not feel
the isolation that sometimes happens with this condition. We are
building a global community for thalassemia and I wanted to be sure that
your organization was included in this resource. This app is entirely
free and will be available in English, Arabic, Greek, and Italian. The
user owns their data, the app is privacy compliant and there are no
in-app charges or advertising.
If you have a moment, I would greatly value your feedback on the app. If you feel there are areas for improvement, specific features you like, or ways you might want to contribute please let me know - I would welcome your expertise and knowledge.
You can check out the app here: https://thalime.app.link/DWWFHuO2lK
Thank you so much for your time and I look forward to hearing from you!
19 February 2018I am a Digital Marketing Specialists for a Creative Agency.
I was doing some industry benchmarking for a client of mine when I came across your website.
I noticed a few technical errors which correspond with a drop of website traffic over the last 6-8 months which I thought I would bring to your attention.
After closer inspection it appears your site is lacking in 4 key criteria.
1- Website Speed
2- Link Diversity
3- Domain Authority
4- Competition Comparison
I can send you over the report which shows all of the above and so much more which will help you at least improve your site, its rankings and traffic.
I would love the chance to help as well however; this report will at least give you a gauge on the quality of what I do. If you are interested then please share your requirement and contact details.
Is this the best email to send it to?
Regards, Sincerely- Kelly Willsion i.d : kellywillsion968@gmail.com"
01 February 2018Hi how are you? We emailed a few years back I am also thalassemia
patient from USA and I am a Doctor of Pharmacy as well. My name is _____. How is everything with you? I need your help please. I wanted to
ask you about Desferal (deferoxamine). How much is this medication in
Singapore for 2gram vial generic form? I would like to purchase it as
soon as possible please guide me so I can buy in Singapore or anywhere
else. Reliable source and safe please. Thank you.
Comment:
I'm from Italy and I'm 38 male, and I'm beta Thal minor (high range of minor).
I was searching for some supplement for my condition. I tried without any success Methylfolate, Vitamin E, and vitamin D, and sometime B complex. No one seems to fix me properly and Hb value it's even less now ! I use to practice endurance sport, but in the last few months it's very difficult to continue for fatigue e soreness. Life in general is more difficult now. I look up into the blog and see that there are some foods that can help thals. I saw the list, and I read about Juicing and so I will ask: is the list you worote a top-down list ? What are the most efficient food/supplement?
Thank you
25 April 2018
Comment:
Hai dan Salam Ceria Goh Chun Hui ..
Sedar tak sedar, tinggal beberapa hari sahaja lagi untuk kita sampai ke bulan Ramadhan.
"Semoga kita dipanjangkan usia agar dapat bertemu bulan Ramadhan pada tahun ini."
Dan seperti biasa, bila tiba bulan Ramadhan nanti, ramai yang akan cuba untuk menjana
pendapatan tambahan atau sampingan dengan cara berniaga.
Kalau Goh Chun Hui ada terfikir untuk buat apa-apa projek sampingan pada bulan Ramadhan
nanti.... inilah waktunya untuk Goh Chun Hui mulakan langkah.
Maklumlah, pada waktu ini, sudah ada beberapa tempat yang akan mula membuka pendaftaran
untuk sewa tapak bagi bazar ramadhan nanti. Lebih-lebih lagi bagi tempat yang HOT! Memang
kena cepat, kalau lambat hantar borang permohonan tapak.. memang melepaslah jawabnya.
Jadi... Goh Chun Hui sudah ada terfikir untuk buat apa-apa projek sampingan?
Jika belum ada.... saya nak cadangkan Goh Chun Hui buat projek BISNES AIR BALANG dan BISNES TUDUNG.
Untuk bacaan lanjut, boleh klik link di bawah.
Bisnes Air Balang >>> Klik Sini
Bisnes Tudung >>> Klik Sini
Baiklah, Goh Chun Hui buat dulu pilihan antara dua tu ya.
Nantikan email dari saya seterusnya tentang kelebihan kedua-dua bisnes tersebut.
15 April 2018
Comment:
One of my patient diagnosed as thalassemia major. He needs financial help for BMT
03 April 2018
Comment:
sir,
i have two twin sisters both are of age 8 years old. both are suffering from thalassemia major our family survives on a very less income of my mother which she earns working as a house maid. But the money she earns is not enough for for our fooding let alone their treatment. we are facing very much problem. please help me how to get financial help for their treatment.
22 March 2018
Comment:
I need Thalaset 29g Infusion Sets.
Do you ship overseas?
13 March 2018
Comment:
kindly contact me 03345342715 for purchase of desphrol infusion pump
22 February 2018
Comment:
If you have a moment, I would greatly value your feedback on the app. If you feel there are areas for improvement, specific features you like, or ways you might want to contribute please let me know - I would welcome your expertise and knowledge.
You can check out the app here: https://thalime.app.link/DWWFHuO2lK
Thank you so much for your time and I look forward to hearing from you!
19 February 2018
Comment:
"Hello,
I was doing some industry benchmarking for a client of mine when I came across your website.
I noticed a few technical errors which correspond with a drop of website traffic over the last 6-8 months which I thought I would bring to your attention.
After closer inspection it appears your site is lacking in 4 key criteria.
1- Website Speed
2- Link Diversity
3- Domain Authority
4- Competition Comparison
I can send you over the report which shows all of the above and so much more which will help you at least improve your site, its rankings and traffic.
I would love the chance to help as well however; this report will at least give you a gauge on the quality of what I do. If you are interested then please share your requirement and contact details.
Is this the best email to send it to?
Regards, Sincerely- Kelly Willsion i.d : kellywillsion968@gmail.com"
01 February 2018
Comment:
31 January 2018
Comment:
Hi Chun Hui,
Thank you
Loving what you?ve posted. I wanted to let you know that the editors decided to feature you in the Shouts & Murmurs Channel, which all new users are pushed to add when they sign up. All of your posts are on that channel and anything you post in the future will go there as well. By the way, one thing I've found useful is to give people the option of listening to my full track on clammr with a "hear more" button. Right now, if you are using the app to create a clammr, it will automatically generate a ?hear more? button if you used souncloud or you can use the ?hear more? button and paste an .mp3 url. Alternatively, if you log into
http://publisher.clammr.com%2c/you can edit your track to add an "extended content" link for your full song/video/podcast on soundcloud, youtube, or if it's a .mp3 url. You can also create a "get on itunes" button or a "read more" button that takes people to any site you choose. All of this stuff will be embedded in the app, but for now you need to use the
publisher site (which you can get to on your mobile phone). There's a quick how-to video here that you can use as a reference:
https://www.youtube.com/channel/UCC5x7Z_UUMu-Ev_k9ftnP1g.>
We'll continue to be in touch with updates and tips. In the meantime, I'd love to hear back on what we can do to make Clammr better for you + anything that you already love about Clammr and want to make sure we keep doing. I'll be sure to pass along to the full team.
I know you from your great website, and glad to introduce our laser safety
products for your quality lasers.
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V.L.T > 30%
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Protect wavelength: 200 - 1400nm
V.L.T > 10%
Look forward to hearing back from you.
Best regards,
Si Hai
A lot of thanks to you.
Pls advice about the standard/perfect age to taking Hydroxyurea of a e beta thallassemia child?
If you take the therapy pls inform.Whats your feeling ? I'm so much excited..
Hope all the thalassemia patients will be completely cure ...
What a great hope...Thanks to my Allah....
Hydroxyurea Therapy
Goh Chun Hui, actually the unborn baby have not committed any offence.Is not it?
see-http://www.drpbanerji.com. Pls help I want to take decision about my baby..
Best regards,
Thanks,
Research Associate
As mentioned, we have another feature opportunity with The Straits Times, for their special series called 'Generation Grit'. It's a bi-weekly feature that profiles inspirational stories of millennials who have experienced setbacks but managed to overcome these adversities.
For this feature, the reporter would like to do an interview with you + short video, in which it'll highlight your journey, struggles, how you overcame these challenges, hopes for the future, etc. The estimated time needed for the whole session will be 3-4 hours.
For now they are looking at doing this in Feb. I hope it's ok for you to do it during the weekday? If you are agreeable, could you kindly suggest about three dates between Feb 12-16 and Feb 19-23, so they have a few to select from? If you have preferred time, eg. morning/afternoon, feel free to mention.
I've also shared with the reporter about your engagement efforts - website, social media, vlogs, podcasts, gatherings, etc. I think it's great effort on your part and very inspirational.
Hope to hear from you soon.
Thank you!
26 January 2018
Comment:
Wow that was strange. I just wrote an very long comment but after I clicked submit my comment didn't appear.
Grrrr... well I'm not writing all that over again. Anyways, just wanted
to say fantastic blog!
http://bitcoin-can-change-your.life - Take your Bitcoin here for Free!
20 January 2018
Comment:
How are you? It is _____ here from Curatio. I hope you remember me.
It has been more than a year since we talked about working together
on Thalassemia community on Curatio platform. The reason that we delayed
it was that we were working on the Android version of the application
and now our Android app is also ready. Now we have both iOS and Android
apps.
I would like to touch base to start working together on this. We are
willing to hire you as a community ambassador/manager for the
Thalassemia community. This is a part-time job which will take 1,2 hours
a day and it is flexible.
14 December 2017
Comment:
hi ,
My son , he is a thalassemia intermediate and recently starts blood transfusion with sgh . We would like join in the gathering group for more understanding.
Thank you
14 December 2017
Comment:Dear dokter,
My daughter ________ has had a bone marrow transplantation in 2012 at the age of 5 years with a HLA identical sister. Everything went well But now after 5 years the decease is back. We are so disappointed. Her condition is a very rare case because blood shows 100 % donor cells and bone marrow 20% donor and 80 % own sick cells. She depends on bloodtransfusion and has them already 4 times now since july. The docter says there are two options, one repeat the bmt which I dont Consider as an option because of Its risques and chances of succes. At the other hand not everything has went wrong as I wrote before. Second option is trying hydrea for 3 months. This to pressurise the bonemarrow and hope that the Good donor cells have the space to grow. It is a test because there is no one in Holland with the same kind of condition. In an article I read that in Iran hospitals thalassemia patients are being treated with hydrea. Now My question: is this medicine in Shifa's case also recommanded? Because the main reason of using this medicine is to pressure her own sick redbloodcells But doesn't this mean that the left 20% Good cells also be pressurised or will they raise better (wich we want to be happen)?? Further my question is : Did you see such a case Like ______ before ? And what was the treatment with improvement?
Please let me know if u used the next medicine: luspatercept. Hospitals in greece are recommending me this medicine instead of hydrea.
I hope u can give me answer on short term. Thank u very much.
05 December 2017
Comment:"Where I can buy this or who want to support me"
03 December 2017
Comment: I m thalessimia major patient. My age is 27, my blood transfusion is
stopped last 2years but iron level goes high and weight is going low. So
what I do?? How to increase height and weight..
19 November 2017
Comment:
I need Bio R 02 plus for poor patient, who can't afford this from Hospital. Pls tell from where we can buy for him & what will be the cost
08 October 2017
Comment:
Is the weight gain possible of a thalassemia carrier (or beta thalassemia Trait)
01 October 2017
Comment:
I do not know better English l have 13
years old only daughter she is suffering from hbe beeta thalassima, I, m
poor family belongs i need to finances helps for treatment thankyou.
14 August 2017
Comment:
I attract first e thala..in 1987. Then
attract b thala.. Then take blood 16.06.2017. Please call I relief this
disease. I am a grocery shopkeepers.
03 August 2017
Comment:
Hi,i need pump..how can i gat it..i am from bangladesh..here not available...ple help me
04 June 2017
Comment:
Hi, dear
I am Dr. _________,I came across your contact and
decided to contact you. I wish to contact you personally for a long term
business relationship, please if you're interested kindly get back to
me at ______ for further details about myself with picture,thank you.
07 May 2017
Comment:
pls help me for tretment of my baby bmt
03 May 2017
Comment:
my baby is thalasemia paisent her name is priyanchi she is 4 yr old we r planing for mud bmt but cost of bmt is 3500000 i arrange 18lach and rest of amount ...
30 April 2017
Comment:
Hello there,
How can we buy the crono pump set?
Thank you...
08 April 2017
Comment:
Hi,
I have just seen your website: thalassemianme.com
I am interested to talk to you about a possible collaboration.
Have you developed the web?
See you soon!
Leandra J Boykin
buytoptreadmill.com26 March 2017
Comment:
"my child raghav 9 yr old suffering from thallasamia we want bmt in cmc vallore"
08 March 2017
Comment:
Hi i have two baby boys they r 13 months old
and recently diagnosed with beta thalassemia major but their hb is 8 and
they r non transfusion dependant but reports said they are major may i
know if they r major then why they doesnt need blood till yet thanks
04 March 2017
Comment:
Sir , I am living in Chandigarh india and i
am a major thalessemia boy the treatment of this going in the Chandigarh
but i want to study abroad is there a chance that if i go abroad the
treatment of the thalessimia continues in abroad ???? If yes pls mail me
manraihimanshu12@gmail.com or how to get a visa
28 February 2017
Comment:
Thalassemia is a cancerous neoplasm in its ownright cancer of blood forming cells in the bone marrow that affect of stem cells and cells of many organs the I..."
15 February 2017
Comment:
My daughter is a THALASSEMIA patient she is
8yrs old. we are from Tamil Nadu ,madurai.she ia waiting for UNRELATED
BONE MORROW TRANSPLAT. A bone-marrow transplant (BMT) procedure has been
suggested for Dharani Shri. MY family lacks the funds, the transplant
date hasn?t been fixed yet. The date will be decided only when the
required amount for the procedure is raised. Currently, she is
undergoing blood transfusions twice a month for her condition.
Can u please help us financially.. We are also trying are best for
raising funds... It wil be useful if u would take this request seriously
for saving a child...THANK YOU...
07 February 2017
Comment:
I am a 79-year-old lady. My FIBROMYALGIA
disease appeared at the age of 74, with no hope of a cure from the
hospital i looked further for an alternative treatments, a friend of
mine told me about Health Herbal Clinic in Johannesburg South Africa who
sell herbal treatments for diseases including FIBROMYALGIA disease, I
contacted the herbal clinic via their website and purchased the
fibromyalgia herbal remedy. I received the herbal remedy through DHL
couriers within 8 days and i immediately commenced usage as prescribed, i
used the herbal remedy for about a month and 1 week, my condition has
greatly improved, all my symptoms including Chronic muscle pain,
Abdominal pain, nausea, I am fibromyalgia free! contact Health Herbal
Clinic via their email healthherbalclinic@gmail.com or visit
www.healthherbalclinic.weebly.com.. PLS fibromyalgia is not a death
sentence, there is a cure!
05 February 2017
Comment:
"Hello,
I need this pump immediately in The Netherlands, where can I buy it?"
24 January 2017
Comment:
I have one 4years male chaild he was thalassemia major his treatment since he age is 6months in bangloor every month blood transfusion and daily 3tablet(B complex,folicacid&calcium ,defrijet500mg) I am middle class family daily labre please help me sir
03 January 2017
Comment:
In some countries you can get it from the
place were you get the Exjade from (the pharmacy), so you can try to ask
at where you get your Exjade from, if they don't have it you can ask
you doctor and if he/she doesn't have it you can try to request it from
the company where they make Exjade. The company's name is Novartis
[Maryam]
Good morning. How to order Exjade Mixing Cup??
I'm from UAE and I have a boy with thalassemia major and he is on Exjade but I don't have the cup?
Thanks
29 December 2016
Comment:
hi,
i need INJ. Novartis Desferal 500mg Vials. please send me best price.
thanks.
regards,
26 December 2016
Comment:
What is the lifespan that can be expected for
beta thalassemia? How can the lifespan be increased?Which is the
country where the longest life can be expected?
20 December 2016
Comment:
I want to give a brief testiomony on how i
was cured of Thalassemia. Thalassemia was inherited by me from my
father. My late father died of this Thalassemia, and when i was
diagnosed after several issues i had with my red blood cell i was told i
am gonna die after some time. So i begin to recall how my late father
died of this disease. My father died having enlarged organs. And i was
having fussiness, paleness, frequent infections, a poor appetite,
failure to thrive, jaundice, which points to the fact that i will end up
just as my father did. i was always indoors because i was ashamed and
slowly waiting for the deal day to come when i will finally close my
eyes not to open them anymore. So as a result of my always being
indoors, i had enough time to surf the web, and make some funny noise
with friends on net. i always tell my friends on net that the day they
don't see me online, they should know that i have join my dad in his
journey to return no more, so all keep praying for me for God to do his
miracle. Until i was browsing one faithful day, i came across a name
Doctor Isimhenmhen Anthony on the internet several times people talks
about how they have benefited from him through the help of his herbal
medications. So in most of their testimonies were a link that swapped me
into a website the link was http://drisimhenmhenherbalhome.com
so i opened the link and found out that it was a website of a herbal
doctor Isimhenmhen Anthony and when i got in, i was very amazed when i
saw so many testifiers talking about how he cured them of various
ailment with the use of his herbs, and roots. giving anything a try if
it can work for me made me to contact the said doctor at first, and
hearing from him after i contacted him made me feel i can still live up
to a whole year before i will die because he so encouraged me and told
me there is nothing too big for God to do. so he said to me his herbs
are very potent that i have to take it in two stages, after which i will
be well again, i doubted this because the American doctors is not aware
of this sort of cure. But like i said earlier giving it a try came to
my mind and i accepted to do as he have said, so after all set have be
done, he prepared his miraculous herbs, and send to me in my country
USA. i used it as he prescribed and in just 20 days the changes in my
health status was tremendous, i responded to the treatment quickly, and
today i am proud to say 'DOCTOR ISIMHENMHEN ANTHONY CURED ME OF MY
THALASSEMIA' His herbs works like a magic, and even did corrected
certain thing in my body. Brothers, Sisters, i owe this man gratitude
for life, my life was saved by him, and for this i with a tears of joy
in my eyes to say ?GOD BE WITH HIM, GUIDE, PROTECT, AND MEET HIM
ACCORDING TO HIS NEED DESIRE?. Please in case you have similar issue and
want a contact with him, his website is (http://drisimhenmhenherbalhome.com)
his email is (doctorisimhenmhenanthony@gmail.com) and his phone number
is (+2348166739726). All his contact details are also stated in his
website.
22 October 2016
Comment:
Hello I was was with Diamond Blackfan and am taking Exjade everyday but now needing a new mixer how do I get one ??
19 October 2016
Comment:
Hi myself dilip iam from hubli(karnataka, india), i am 36yrs of age & have thalassemia major by birth. All these yrs i have struggled a lot worked in mnc companies for full time & however i used to take care of my treatment. Recentely i had to resign my job due to severe health issue, i cleared that also, now when i want to work again to take care of my health no companies are taking me, due to age criteria trying for govt jobs no responce. My question is why do companies keep age criteria for jobs atleast 40 is ok why 30?? How should people having problems like us should survive, who is responsible, equally govt should support us, but we are not getting any support....
06 October 2016
Comment:
Dear Jack,
I hope you are well and do hope you get this email, so that you can shade some light onto my inquiries. My sister and young brother are patients of Thalassemia Major and at the moment I am desperately looking to buy "Canafusion CA500 Ambulatory Syringe Pump".
If you could kindly provide me with the price of the pump+needles that would be greatly appreciated. They live in Bangladesh and I am in Perth, Australia. I do have a very close Singaporean friend who would be able to cooperate if needed.
30 September 2016
Comment:
Dear Sir/ Madam,
Hi, I'm a thalassemia minor carrier,I'm now 20 years old. I have a question about any food that minor carrier should be avoid, food that need to be eaten more and any supplement that need to be consume.
After I have done research from online, food need to be avoid are high in Iron such as meat. Beside that,supplement should be consume are Vitamin B12 and B6, Vitamin E, Calcium, Vitamin D and Energizing Soy Protein. Correct me if I'm wrong.
Furthermore, I have found that wheat grass is good for thalassemia major, but I'm not sure that is suitable for minor carrier. I have seen a Chinese medicine doctor, he say that I must avoid food like celery, black fungus, bitter gourd.
Hope that you able to answer my question. Thank you
Best regards,
21 September 2016
Comment:
even my bro is suffering from Thalassemia he will get by the doctor DOCTOR ISIMHENMHEN but i stay in INDIA NORTH EAST MEGHALAYA PLZ HELP ME PLZ CONTACT ME IN THIS NO. +91 986-351-2756
PLZ HELP ME
10 September 2016
Comment:
Hi,
Im intrested in infusion pump basic model semi automatic please quote me your best possible price
31 August 2016
Comment:
Hi BROTHER
I?m also like u fighting with thalassemia. Please help me to make a diet chart that help me to gain weight and stay fit n healthy . Also i want to know is there any upcoming thalassemia treatment in future . Thankyou so much . Please must reply. Stay healthy n live long .
28 August 2016
Comment:
I have one my child as thallessemia major. Its required iron chellation thoraphy pump. For desfrrol infusion . So i need free pump kindly helpme out.
Qadeer Ahmed
Post box number 41050
Dubai
25 August 2016
Comment:
hello.how to cure thallsmia major. my son is survie this problem.now he treatment under homiopathy.but ican't know he cure or n't.plz comunicate urs tips
21 August 2016
Comment:
Ma ak thalassemia ka pesent ho maje ka pump chay plz
06 August 2016
Comment:
I want desfral pump
30 July 2016
Comment:
Hellosir, i am thelessimia patient my age25year plese finance gelp me
24 July 2016
Comment:
Hye chun hui, I'm really want to know your experience when doctor has declared your desease. Would you share your feeling, your daily life in the beginning to survive. Because I'm just reading in the web without having a real story. Would you share it?
19 July 2016
Comment:
I'm from UAE and I have a boy with thalassemia major and he is on Exjade but I don't have the cup?
Thanks"
18 July 2016
Comment:
"My brother is thallasemia major patien. He is now admit in ICU. But our family have no abilite for his proper treatment. I want to financial help. Please hel..."
16 July 2016
Comment:
Hi Goh,
I am a thalasemic patient. I was surfing through internet and found your page. I want to interact with you and want to know more about you.
I want to know about all the medicines and filters (BioR 02 plus) which are posted in your page . Could you pls share your id so that we can chat and talk.
13 July 2016
Comment:
Contact me my sister is a thalassemia patient and he is not good nowMy num is 03118096488My email address ismoti302@yahoo.comPlzzzzzzzzzz?
12 July 2016
Comment:
"I want 2 mixers"
21 June 2016
Comment:
I want to give a brief testiomony on how i was cured of Thalassemia. Thalassemia was inherited by me from my father. My late father died of this Thalassemia, and when i was diagnosed after several issues i had with my red blood cell i was told i am gonna die after some time. So i begin to recall how my late father died of this disease. My father died having enlarged organs. And i was having fussiness, paleness, frequent infections, a poor appetite, failure to thrive, jaundice, which points to the fact that i will end up just as my father did. i was always indoors because i was ashamed and slowly waiting for the deal day to come when i will finally close my eyes not to open them anymore. So as a result of my always being indoors, i had enough time to surf the web, and make some funny noise with friends on net. i always tell my friends on net that the day they don't see me online, they should know that i have join my dad in his journey to return no more, so all keep praying for me for God to do his miracle. Until i was browsing one faithful day, i came across a name Doctor Isimhenmhen Anthony on the internet several times people talks about how they have benefited from him through the help of his herbal medications. So in most of their testimonies were a link that swapped me into a website the link was http://drisimhenmhenherbalhome.com so i opened the link and found out that it was a website of a herbal doctor Isimhenmhen Anthony and when i got in, i was very amazed when i saw so many testifiers talking about how he cured them of various ailment with the use of his herbs, and roots. giving anything a try if it can work for me made me to contact the said doctor at first, and hearing from him after i contacted him made me feel i can still live up to a whole year before i will die because he so encouraged me and told me there is nothing too big for God to do. so he said to me his herbs are very potent that i have to take it in two stages, after which i will be well again, i doubted this because the American doctors is not aware of this sort of cure. But like i said earlier giving it a try came to my mind and i accepted to do as he have said, so after all set have be done, he prepared his miraculous herbs, and send to me in my country USA. i used it as he prescribed and in just 20 days the changes in my health status was tremendous, i responded to the treatment quickly, and today i am proud to say 'DOCTOR ISIMHENMHEN ANTHONY CURED ME OF MY THALASSEMIA' His herbs works like a magic, and even did corrected certain thing in my body. Brothers, Sisters, i owe this man gratitude for life, my life was saved by him, and for this i with a tears of joy in my eyes to say ?GOD BE WITH HIM, GUIDE, PROTECT, AND MEET HIM ACCORDING TO HIS NEED DESIRE?. Please in case you have similar issue and want a contact with him, his website is (http://drisimhenmhenherbalhome.com) his email is (doctorisimhenmhenanthony@gmail.com) and his phone number is (+2348166739726). All his contact details are also stated in his website.
10 June 2016
Comment:
I want desfral pump as soon be as possible
08 June 2016
Comment:
I need one infusion pump. Kindly provide me the quotation.
18 May 2016
Comment:
Hello! I'm _____ from Malaysia. I've watched few of your videos on youtube and i am also a thalassemia patient as well. I am currently using the old bulky desferal syringe driver and i'm very interested to get the crono infusion pump because well why not if its good. Also, i'm scared that my machine will be broken because i have been using it for about 10 years now. You mentioned in your video that u know someone named Richard that can get this pump. Do u know where can i contact him?
23 April 2016
Comment:
Hello dear sir I'm thalassemia patient i need desferal pump for iron chelation therapy pump not available in Pakistan please send me infusion pump
22 April 2016
Comment:
Dear Goh Chun Hui,
I hope you are doing very well. This is ______, CTO, at Curatio Networks.
I am very inspired by your great effort and hard work in serving Thalassemia community. I have been a member of your Facebook page and I really appreciate all your work and I wish we had more people like you in Thalassemia community.
As you know, in Curatio we are also trying to serve Thalassemia community all around the world. As you know Curatio app for Thalassemia is the winner of the Global Challenge for Thalassemia in 2013 in Silicon Valley and since then we have tried to develop an application which can be used by all Thalassemia patients and family around the world.
You and your group has been one of the most active people I have notified over the last 2 years so I would like to invite you to have a chat to discuss how we can work together to better serve the community.
I have several ideas in mind for how we can collaborate together to better serve the Thalassemia patients. Would you be available for a chat to further discuss the opportunities together?
Please let me know. I am looking forward to hearing back from you.
Regards,
19 April 2016
Comment:
sir , with respect,
it is submitted that i have blessed with twins one girl and one boy on 11 jan 2015 but unfortunately just after 7 month Dr detected that they both have Thalasssemia major, i request your good self that plz help me to get them treated as I dont have that much money that i can treat both of them......., now they are of 1 year 3 months , we are depended on blood transfusion which is very diffficult as both have same problem and there blood filling dates are different we have to visit twice a month for filling blood, , plz on humanity basis help me to treat them, as everytime we are just worried about the kids, there mother is in troma , she is helping but had gone in depression. She feel like suicide but i manage her by saying if you will also die how will both the kids survive alone, how can i alone take care of the kids than she understand and , but being true to you i also feel the same but thinking of kids make me strong. just hoping some one will help us, plz t he NGO who helps to treat give them my cell no or provide me there information, my no is __________, plz contact me.
with regards
05 April 2016
Comment:
Can you tell me where to buy crono pump?
28 March 2016
Comment:
My daughter is suffering from Thalassemia Major. Now doctor has advised for Desferal Inj. For this I need to purchase the Pump. Kindly let me know the price...
24 March 2016
Comment:
Hello,
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Here is a detailed PDF about the features and whats possible with your own full branded app from Chatwing.
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+1 (617) 863-2906 support
SMS/Text too
19 March 2016
Comment:
How can we overcome on iron overload and due to overload of iron my height is short??
18 March 2016
Comment:
I am a patient of Thalassemia and my height is not increasing please tell me solution for increasing my height.
10 March 2016
Comment:
Hello. My daughter has Sickle cell disease and has gone through lots if Exjade mixing cups. Would you know where I can order it from? Her doctor's hadn't had it for a while now. Thank you!
10 March 2016
Comment:
Hi, my name is _____. I have seen your videos on youtube and I see that you have a lot of exjade. That medication is really expensive here in México. My son is currently in the hospital and needs this medication. Is there anyway you can ship me some? Please help me if you can and I will pay you if you send me some.
07 March 2016
Comment:
I am suffering from thelessimia major...I want to work in abroad ...so plz reply me can I go to abroad or not...plz reply me as soon
02 March 2016
Comment:
Can you help me check if u know of anyone selling infusion pump? I'm looking for one as my old pump has broken down. Pls let me know. Thanks
01 March 2016
Comment:
Hi Goh Chun Hui
I would like to contact you to discuss more about thalassemia. Please write to me if you can able to call me and discuss.
Thanks
29 February 2016
Comment:
Can you tell me price for desferal pump?
19 February 2016
Comment:
I have 2 (two) dauthers.Both of suffering from Thellasemia .Every month they need blood transfusion and need much money for medicine .I am doing a lttle job....
18 February 2016
Comment:
Hi Goh Chun Hui,
I asked you few weeks ago cost for BT in Singapore for Non residence. If you can also provide information how can i proceed for BT with my new born son's I have his prescriptions confirming his thalassemia status and regular blood transfusion from indian doctors. My family is taking care of his transfusion back India presently. I am planning to bring him to singapore once all information available with me related to transfusion and costing
Thanks
04 February 2016
Comment:
Greetings from Green Cross Medical Science!
Green Cross Medical Science is one of the top medical supplier/manufacturer in the korean market based in Yong-in, Republic of Korea.
The company was founded in 1972, and currently employing 171 employees.
We would like to introduce our Core / New products for 2016.
Any inquiry is more than welcome! Please contact us at:
or
+82-31-260-0962/0965
04 February 2016
Comment:
thank you so much for taking the time to make such an informative,meaningful and helpful video. My sons and I were just diagnosed with Thalassemia and it is quite consoling to watch something
20 January 2016
Comment:
I want to purchase the defeseral infision pump. Can you tell me where and how i buy the pump and the i want to know the cost of pump. So please can you guide me
18 January 2016
Comment:
ALL KIDNEY PATIENT CAN CONTACT US FOR ANY ADVICE, GUIDANCE AND SUPPORT REGARDING YOUR TRANSPLANTATION THIS IS A FREE SERVICE ONLY TO HELP YOU. YOU CAN WRITE US AT (kellyspecialisthome@gmail.com) Or Call Us +918123908105
15 January 2016
Comment:
Hi I am Iranian thalassemia society _______. I need this kind of Desferal pump. It allows the company to send me your contact number or catalog? Or announce its price? I am waiting for your answer.
13 January 2016
Comment:
Dear Sir,
Greetings! We, GREEN CROSS MEDICAL SICENCE are an Korean manufacturer providing In-Vitro-Diagnostic products in the global market.
We are pleased to invite you to Arab Health 2016, Dubai. It would be happy to have a chance to introduce innovated new products for future collaboration.
Feel free to contact us to arrange a meeting with our team at Arab Health.
Look forward to seeing you!
11 January 2016
Comment:
"MY RELATIVE IS SUFFERING FROM MAJOR THALASEMIA"
04 January 2016
Comment:
"pls help my son he is major kids & i dont show his condition, pls help for finance
19 December 2015
Comment:
my daughter has a beta thalassemia she started at the age of 7months taking a blood transfusion regularly after 1mnth.She is 1yr and 5mnths nw at dis age wat other medication is safe and effective with out blood trandfusion?she's taking folic acid.pls reply thank u.
14 November 2015
Comment:
I am _______ and I am from Dhaka in Bangladesh. I want to buy an Ambulatory Infusion Pump for 6 years old son ________ who is patient of E-beta Thalassemeia Major. His iron level increasing gradually because of frequent blood transfusion. anyway I want to buy Crono Brand Infusion Pump but I don?t know where from I can buy it. I am also in confusion about the Model which is Best for my son. So, I beg your kind co-operation and proper advice about overall procedure to buy an Infusion Pump. (Crono or Crono 30)
Your kind cooperation is highly anticipated.
Very best Regard
02 November 2015
Comment:
How to use wheat grass ?????
27 October 2015
Comment:
Hi , I am currently from Singapore and was diagnosed with immunodeficiency . I would like to buy the used syringe driver from u . I don't have insurance and I am not from a rich family to afford the pump . Can sell it to me pls ? Thanks
24 October 2015
Comment:
I would really like to order Ferriprox, without a prescription. Any help? I dont know any other Thalassemia patients.
08 October 2015
Comment:
in which place "medicine wheatgrass" is available in Pakistan.
02 October 2015
Comment:
Dear Thalassemia n me authorities,
My relative's child need your immediate help. He is ill with Thalessemia B. Till now we have used Medser Srl`s pumps, but it always stops and child is in a very hard state as iron in his blood is very very high now, we are stabilizing it with tablets, but as you know, they harm heart. Please, tell us the price of Crono 20 and if you can send it to Azerbaijan or not? Actually price doesn't matter for us, child is in a very bad condition and we need this pump immediately, we will pay the immediate post charges, but please help us
Looking forward to your response as soon as possible
25 September 2015
Comment:
Hi,
I was wondering if you might be interested in linking to my website http://www.betbind.com/ from your page?
We offer a completely free service whereby our users can log their betting activity to keep a complete bet history. We feel our service is very useful as detailed records helps people stay on track and make better decisions. We think it may be a useful resource for your readers.
Thank you for your consideration.
Kind Regards,
Jim
24 September 2015
Comment:
Dear Friend:
Good day!
1.You may be happy to find a new wound care manufacturer with superior quality & much lower cost than 3M,Smith-nephew,Kendal,Medline and others.
2.Main market: US, Germany, UK, France,The Nethelands...
3.Our OEM services satisfy customers,such as Urgo, Vygon,BSN...
4.All the product are marked with CE, ISO13485, FDA certificate.
.jpg)
Please tell us your specific request.
Free sample can be sent for your test.
Thanks&Best regards
01 September 2015
Comment:
Sir I am 25 year old thelasemia major patient n my elder brother who also surf this disease
01 September 2015
Comment:
Hi I am 32 years old and have a kidney stone the size of the stone is 7 mm I try to remove by lathe it is costly and I don?t have ability to do this. I am dying with severe kidney pain please Help me !
26 August 2015
Comment:
my son is thalasemea major,he is having regular blood transfutions an iron chelation therapy..i want to know by maintaining this process what is his life expectency? how long is he going to live?can he live a normal persons life?
20 August 2015
Comment:
I want buy thala sets to my Dauter for desferol
18 August 2015
Comment:
I want to ask u something regarding my brothers height.he is 14 years and his height is 150cm and weight is 42kg.so can you pls tell me regarding increasing his height and weight?
13 August 2015
Comment:
Hi,
My name is _______ and I work for _______, an international digital marketing company. We are looking for websites interested in publishing editorial content produced by our team of creative and experienced writers. I am writing to you to enquire whether this might be of interest for thalassemianme.com?
We are interested in placing a well-written, unique and personally designed article on your site with a link to our client. For publishing such an article and keeping it live for 12 months, we wish to offer you remuneration. Please get in touch if this is of interest to you, and we can discuss the conditions further.
Kind regards,
01 August 2015
Comment:
Good Day Sir,
My Father in Law is currently using Desferal for Chelation, his doctor advises to buy desferal
infusion pump because it is a lot cheaper in longterm use. My question is where we can buy this desferal infusion pump here in Davao City, Philippines.
Thank you very much Sir.
22 July 2015
Comment:
Hi Chun Hui,
?
Thank you so much for sharing
the
? ?
story for our
annual report. The Singapore Red Cross Impact Report 2014 for the financial year ended 31 December 2014 is now available online.
In appreciation of the combined contributions of our volunteers, donors, partners and staff, we have focused this report on the impact that our collective effort has made on those we serve. The report includes true stories of transformed lives and renewed hope and you can find many more at my.redcross.sg - our commemorative site housing stories from 65 years of service to humanity by SRC.
Thank you for your support throughout the year 2014. As we look ahead into the future, I look forward to your continued partnership in serving humanity and saving lives.
?
Warm regards,
20 July 2015
Comment:
Hi , How are you,
I?m _______ I?m 19 yrs old. I?m suffering from thalassemia. I need your help i wanna know that if i go abroad (Canada) can i get help from the canadian thalassemia society if i face any health problem, they help me or not.?
According to u what can i do for a better n easy life ? Can i get some financial help from anyboady or govt. ? Please guide me dear
Thankyou
15 July 2015
Comment:
Dear Friend:
Good day!
1.You may be happy to find a new wound care manufacturer with superior quality & favorable cost than 3M,Smith-nephew,Kendal,Medline and others.
2.Main market: US, Germany,
3.Our OEM services satisfy customers,such as Urgo, Vygon,BSN...
4.All the product are marked
Please tell me what items are more salable for you.
Free sample can be sent for your test.
Manufacture:Wound dressing/ IV cannula dressing/ Waterproof dressing/
Thanks&Best regards
Eminda
Sales Manager
Ustar Medical Supplier Co., Ltd
WEB:www.ustarmedical.com
EMAIL: info@ustarmedical.com;u
MOBILE:+86-13570345325
Skype:ustarmedical
10 July 2015
Comment:
hello bro.
my name ______ im 24 yrs i have sickle cell thalasimya and g6bd my ferritin last time was 3800 and now i start taking exjade 500 two times daily
05 July 2015
Comment:
Hello sir,
my sister's baby is Thalassemia major patient. We are very hopeless nobody is helping us. our financial condition is not good. plz give me any suggestion so that we can give him better treatment.....
26 June 2015
Comment:
Hello I have thallessemia major and have been really weak, tired, breathless for about a month now I have spoken to my Dr. and all seems to be fine.
I have also been following a strictly vegetarian diet for about a month and I am wondering if this is the reason for my symtoms.
Any advice you Co u could offer would be appriciated.
Regards,
19 June 2015
Comment:
I'm hemophelic person as will as disable so i' can't success to walk so i'm searching some kindhearted person to help me if you can help me.my details is keshav bahadur karki ,Baruneshwor 5 okhaldhunga.
08 June 2015
Comment:
Hi ,I'm from Malaysia I also have talasemia which carrier from my father's gene he got talasemia too.So, my young sister don't hve...but I'm the eldest one.so can I know you is 1/2 or 2/2 talasemia
01 June 2015
Comment:
Hey , whats are the 4 foods that can help to my thalasemia minor for increased hemoglobin?
31 May 2015
Comment:
I am thalassima patient from gurgaon name _______ i am very poor please help injection and madisine thank you
24 May 2015
Comment:
hello my freind Goh Chun Hui ,I'm _______ am from morocco , am patient thalassemia major and nurse and social assistance for a patients thalassémia, that the patient's thalassemia therapists in hospital the kids in Rabat morocco ,They desperately need to pumps for désferal , if as possible you provide us to pumps , because this type to pumps is not available in our country ,
thank you ,
21 May 2015
Comment:
Dear Sir/ Madam,
My name is ________ from Udaipur, Rajasthan(India). My daughter is suffering from the disorder of Thalassemia Measure. I am writing this letter with a great scope of help regarding the Information of the thalassemia Measure .
I will be very grateful to you If you could help me in knowing all the information regarding the Thalaseemia Measure, For eg: the Treatment, and its stages, the General Information of the thalassemia Measure and the cost of the treatment , best Hospitals and the Doctors who are specialised to treat the thalassemia Measure,and any NGO for the help regarding the medicines and treatment.
I Look forward for your positive reply and will hope to have a great support and hlp from your side.
Kindest Regards,
02 May 2015
Comment:
I am 40 years old working lady.My thalassemia is miner.I need dite chat for myself.
28 April 2015
Comment:
I have 7 years a kid having Thalassemia Major. I need a infusion pump for him but I don have capacity to purchase it. could you help me in this regard.
23 April 2015
Comment:
Hello
I would be most grateful if you could give permission to use articles on Diet on your website to Thalassemia Society Mauritius (http://www.thalassemiasociety.org/).
Link: https://www.thalassemianme.com/
A note at the footer will mention: courtesy: Thalassemia N Me
Meanwhile, I look forward to hear from you shortly and would thank you for same.
Best regards
Webmaster (for Thalassemia Society of Mauritius)
19 April 2015
Comment:
Can u do for me I want to know the price for thalaset?
18 April 2015
Comment:
Please note,after 9 transfusion my babies serum ferritin is 459.Last month test result of serum Iron is 25.00mcmol/L and TIBC 49.00 mcmol/L .
Yesterday was her transfusion day .But after 6 weeks of getting transfusion her hb report is 10.03.Earlier time we always found after 6/7 weeks hb 8 to 7.This time it is good.So we will test her hb next week again.
What do you think is her chelation is need? Her age is 18 months 23 days and weight is 13 kg.
07 April 2015
Comment:
My 12 yr son often have transfusion when hb 7.9 every 4 weeks. Is it healthier to have it in hb min 8.5?
02 April 2015
Comment:
Hi, I?m part of the team at Clammr, a mobile app that some of our early users refer to as an audio version of twitter. I learned recently about your youtube channel THALASSEMIA N ME ? thanks for publishing it. We have found that many youtube videos translate well to audio highlights and lead-ins, and I write to see if you?d be interested in becoming a promoted partner on Clammr.
Clammr provides listeners with a continuous stream of short audio clips (max 18 second clips), many of which are expandable into full-length audio or youtube videos. We've seen audio snippets from youtube videos placed on Clammr to create terrific highlights as well as lead-ins that get users to click on a "see more" button that can stream the youtube video. One of my responsibilities at Clammr is to identify great talent that can make the best use of the app. Clammr is looking to feature and promote great youtube and podcast talent on the app and as part of the company?s overall publicity efforts. Are you interested in being nominated to become a youtube channel that Clammr promotes? I?m happy to share tips with you on creating a great Clammr presence.
A few things we?ll be looking for in selecting candidates: establishing an active presence on Clammr with multiple posts; demonstrating independen audience ?pull?; and actively promoting your own Clammr posts (e.g., on Facebook, twitter etc).
If you?d like to check out Clammr and be nominated as a Promoted Podcast Talent, you can get started by doing the following:
(1) Download Clammr. You can search for the word "Clammr" in the App Store or go to http://ponyexpress.clammrapp.com/l/nhialYUjEN1rnfP4X94G763g/B90qkrjIEZp763
qLyQ763Vg9oA/2BdcKNXuVEr1T04w3E5xWw
(2) Post audio clips to your account
(3) After you have an account and have put up your first posts, submit your name on our Promoted Podcast Talent Form so that we know what username to direct listeners toward
I put together some answers to frequently asked questions at this link. For example, if you don?t have an iPhone, there are some options for how you can still be featured on Clammr even while the team is developing the Android version. Also, there are some tips on how to maximize listenership for your posts with things like scheduling for future release; creating "hear more" buttons that stream full audio; and using hashtags to make your posts more searchable. There are some quick how-to videos on posting to Clammr here.
Please get in touch with questions or feedback on the app if you have a chance to try it.
Thank you,
Hey,
Loving what you?ve posted. I wanted to let you know that the editors decided to feature you in the Shouts & Murmurs Channel, which all new users are pushed to add when they sign up. All of your posts are on that channel and anything you post in the future will go there as well. By the way, one thing I've found useful is to give people the option of listening to my full track on clammr with a "hear more" button. Right now, if you are using the app to create a clammr, it will automatically generate a ?hear more? button if you used souncloud or you can use the ?hear more? button and paste an .mp3 url. Alternatively, if you log into
http://publisher.clammr.com%2c/you can edit your track to add an "extended content" link for your full song/video/podcast on soundcloud, youtube, or if it's a .mp3 url. You can also create a "get on itunes" button or a "read more" button that takes people to any site you choose. All of this stuff will be embedded in the app, but for now you need to use the
publisher site (which you can get to on your mobile phone). There's a quick how-to video here that you can use as a reference:
https://www.youtube.com/channel/UCC5x7Z_UUMu-Ev_k9ftnP1g.>
We'll continue to be in touch with updates and tips. In the meantime, I'd love to hear back on what we can do to make Clammr better for you + anything that you already love about Clammr and want to make sure we keep doing. I'll be sure to pass along to the full team.
Emily
30 March 2015
Comment:
Can you please let me know the price of a crono pump and a box of thala set?
26 March 2015
Comment:
Hello sir i am ________ a major blood thalassemia patient me and my big brother surf from this disease i want your help.
24 March 2015
Comment:
Sir i am 24 year old thalassemia patient i want your guidence i belong to poor family.
24 March 2015
Comment:
Please note, now we are trying to grow wheatgrass at our home and it is success.Our wheatgrass plant is now 4 days old.Pls suggest me what will be the wheatgrass juice dose for my 18 months old baby,how will she take it and when I will give? I mean taking it an empty stomach is benefit?
17 March 2015
Comment:
Story of Goh Chun Hui, Blood Recipient for Annual Report
Mr Goh Chun Hui, an instructor, was diagnosed with Thalassemia when he was only three. His parents brought him to consult the doctor because he always appeared pale, weak and without much appetite.
He started blood transfusions at a tender age of seven. ?The doctor said I should start blood transfusions because I couldn?t sustain the haemoglobin,? he said.
At that time, Mr Goh would go for his blood transfusions every five weeks. Now 27, he goes for his blood transfusions every three weeks.
He thanks blood donors for the gift of blood. ?Without your blood donation, I would feel very tired, as though I haven?t slept in a day. I would be very restless; I would not know what I am doing and I will also not be able to concentrate on anything. Climbing a staircase would have been akin to scaling a mountain. Walking across a traffic junction would have been like running a 2.4km. With each blood transfusion, I feel more energetic and am able to focus more. I also have better stamina,? explained Mr Goh.
?I would like to thank blood donors for keeping me alive. Thank you for taking your time, effort and trouble to donate blood during your free day, to help us get through this period when we are low in blood. Your blood runs through our veins. You have really made a difference in our lives. Without you, we won?t be here,? affirmed Mr Goh.
16 March 2015
Comment:
Please advice for wheatgrass.How it is helpful for thall patients and how it is working?
Do you think wheatgrass will be helpful for my 17 months 17 days old baby?
Wheatgrass,Exjade,Desferal are not available in Bangladesh.So what will I do or how can I import them by online order?
Pls suggest...
Best Regards,
14 March 2015
Comment:
I have a 5 years old son with Alpha Thalassemia trait/G6PD deficiency/Ovalocytosis
Unfortunately, we dont have a paediatric haemotologist in my city"
14 March 2015
Comment:
I m spending tym with my 1yr baby girl who is thallessemia patient. Pal I need to know if there is any Iron free milk powder to feed mah baby though she is taking her mother milk too. We are very worried for her growth as she is still around 8 to 9kg, but not seen her gud health progress
12 March 2015
Comment:
110, i am a major thalassemia patient i want your opinion to make my life better n tell me can i take protien supliments for weight gaining
05 March 2015
Comment:
Hi, I?m a student at the Berklee College of Music and have been working with a mobile app called Clammr that is like an audio version of twitter. I learned recently about your podcast under the name Goh Chun Hui on Spreaker ? thanks for publishing it.
Clammr provides listeners with a continuous stream of short audio clips (max 18 second clips). My classmates and I have gotten excited about Clammr as a way to intro people to our music. But, the founding focus of Clammr was on making spoken word audio easier to discover and share: there's a "hear more" option for users to expand the mini-clips into full-length audio; each of the audio clips is tweetable and shareable on facebook/txt/email. There are many leading podcasts in the app and users are continually looking for expanded podcast options in Clammr. Listeners enjoy hearing highlights of the most interesting moments of podcasts and the small size of the Clammr clips is also giving them a way to sample and discover new podcasts the way they would with music.
One of my responsibilities at Clammr is to identify great talent that can make the best use of the app. Clammr is looking to feature and promote great podcasts on the app and as part of the company?s overall publicity efforts. Are you interested in being nominated to become a podcast that Clammr promotes? I think you?d have a good shot and I?m happy to share tips with you on creating a great Clammr presence. A few things we?ll be looking for in selecting candidates:
(1) Establishing an active presence on Clammr by posting highlights and other clps. You can post by using the Clammr app pull in and crop tracks that are on your phone or in your podcast; loading MP3s on the Clammr Publisher Portal; or using the mic recording feature in the app (there you can use multi-track recording). The idea is that Clammr can be a low-risk zone where you share your finished stuff as well as practice sessions, outtakes, and things that fans might not normally get an inside view on. I can give you some tips on using the Clammr publisher portal and in-app recording feature.
(2) Demonstrating independent audience interest in your work. Clammr can give you a boost by putting you in one of its default recommended channels for new users. We?re also looking for you to show that you?re able to get some independent interest. Easiest way to do this is to encourage your existing fans to follow you on Clammr and give likes to your posts.
(3) Promoting your own Clammr work. You can share anything that?s on Clammr with others via facebook, twitter, email, or sms. We?ll be looking to see if you get behind promoting your own presence and can therefore benefit from Clammr giving you an additional boost.
I started working with Clammr because the team is extremely passionate about creating a thriving platform that connects new listeners with great audio content. Smaller, bite-sized content makes it easy for new listeners to quickly explore tons of material, without having to go far to search for it, increasing the odds of them discovering folks like you and me. I'm a music student and songwriter as well, and I feel strongly about Clammr because I truly think this could be the next platform for artists and other audio talent (me included) to get our stuff out there. I wouldn?t be reaching out to you if I didn?t truly believe that.
If you?d like to check out Clammr and be nominated as a Promoted Podcast Talent, you can get started by doing the following:
(1) Download Clammr. You can search for the word "Clammr" in the App Store or go to http://ponyexpress.clammrapp.com/l/sBxhb4KY9f2NBz763hLmzdJg/2BdcKNXuVEr1T04w3E5xWw/8GzA9GcqOeDMdOB8NVNmYg
(2) Post audio clips to your account
(3) After you have an account and have put up your first posts, submit your name on our Promoted Podcast Talent Form so that we know what username to direct listeners toward
I put together some answers to frequently asked questions at http://ponyexpress.clammrapp.com/l/sBxhb4KY9f2NBz763hLmzdJg/151pDNMajirlHEbJKT8wxQ/8GzA9GcqOeDMdOB8NVNmYg. For example, if you don?t have an iPhone, there are some options for how you can still be featured on Clammr even while the team is developing the Android version. Also, there are some tips on how to maximize listenership for your posts with things like scheduling for future release, creating "hear more" buttons that stream full audio, using hashtags to make your posts more searchable. There are some quick how-to videos on posting to Clammr at http://ponyexpress.clammrapp.com/l/sBxhb4KY9f2NBz763hLmzdJg/kLkGIvOSgMX9pqB8928UjRBw/8GzA9GcqOeDMdOB8NVNmYg.
I'd love to hear any thoughts on what else you'd like to see in the app. The development team is pretty obsessed with user feedback and ideas are always welcome.
Thank you,
Emily
28 February 2015
Comment:
How r you? How about your physical condition?Hope you are doing well.
Dear if a thalassemia patient take meal with milk together then the iron of meal will reduce/less absorption? I mean is the milk reduce the food iron? Is it helpful?
My baby already taken 8 times of transfusion.Next week I will test her Hb and iron level.Up to what level is it safe? When I will start her chelaton therapy?
Pls advice me about the iron overload therapy?Which medicine will be best?
How can I give my baby magnesium and vit D? I don't know at present what the Hb level of my baby? But her growth,weight is normal and ok.
Dear you know ! she is soooooooooooo beautiful and I am feeling great when I hold her in my arms and looking her so much beauty than me...Hahhaaaa (Don't mind)
Pls advice me about IP6. When it will applicable? Is it a iron chelaton medicine?
Is dark chocolate and cake are harmful or contain high iron?
There are lots of query pls don't mind.When you will free or get time then pls try to answer me.
Best Regards,
22 February 2015
Comment:
My neighbours daughter is a THALASSEMIA patient she is 7yrs old. we are from Tamil Nadu ,Chennai
Can u please help us financially.. We are also trying are best for raising funds... It wil be useful if u would take this request seriously for saving a child.
01 February 2015
Comment:
plz plz i really need your thalaset my fertin level is 6000 so plz tell me the price of one box of tahaset and than i will send you my address and than you send me the package i am frome pakistan
27 January 2015
Comment:
Have you experienced any side effect with Exjade? Where did you get the Exjade mixing cup? Thank you. ?
24 January 2015
Comment:
Dear Goh Chun Hui
I am a parent of two thalassemic child. Is there are any updated news for permanent cure?
04 January 2015
Comment:
i am thalassemia patient.i need desferal
26 December 2014
Comment:
hi chun hui nice to see your page and videos. i live in new york and and i have thal major. i am a doctor of pharmacy (clinical) and am 28 years old. i wanted to be friends we can discuss various things. what is your email address?
11 December 2014
Comment:
Dear,
How are you ?Hope you are doing well.
Pls advice me which will be better for my baby?
Black tea
Black coffee
Tea with milk
Coffee with milk
Sometimes I'm giving to my baby ripe banana.Is it harmful?Which are harmful fruits or which fruits have too much iron ?
Please give your valuable suggestion..
Best Regards,
08 December 2014
Comment:
My 3 year baby is thelisemya intermeded patent help me
08 December 2014
Comment:
"Can you please tell me the price for a desferal pump.
I am a Thalassemia Major Patient at Monash Medical Centre and I was on the pump but now I am on Exjade"
01 December 2014
Comment:
i got a patient suffering thalassemia.age-58year.female.i deside to give some food supliment like,wheetgrass tablet,aloe vera(aloe barbadency miller)gel,forever absorbent-c tab..
what you suggest?
24 November 2014
Comment:
Hello Goh Chun Hui, I am an American living in the Midwest part of the country and Thalassemia is not a disease that's relatively well know around here except for the Far East and west coast. I have alpha thalassemia Hbh disease and get transfused when my hemoglobin level dips below 8. It's the only way to get insurance to approve a transfusion. I read your profile and you stated you have Thalassemia Major since 7 where before it was intermedia. Since your Asian decent and most likely to have the Alpha version, do you have the Beta version that's floats in between intermedia and major after your transfusions? I am interested in finding out more details of your prognosis as I feel terrible regardless if my Hemo levels are in the upper 9's or in the 7's. See, it states that hemoglobin HbH has an affinity to hold on to the oxygen so my thinking is even if my numbers are high or low, the amount of oxygen my cells are up taking remain the same regardless. The only difference is the lab tests numbers but I feel tired even after a transfusion. I'm also looking for a good cause or organization to donate to but I'd like the money to be more specific than to donate to a large organization where the money is likely to be apart of administrative costs and not the patient. My name is _______, and thank you for reading this post. Your response is in high anticipation.
15 November 2014
Comment:
Hi there! Thanks for the great work you?re doing for the thalassaemia community and the initiative you?re showing in trying to connect others.
I don?t know if you?re aware that last week at the TIF conference we launched an app specifically designed to help people living with thalassaemia around the world. It?s called ThaliMe and my company, Curatio, developed it and contributed resources to get it in the hands of as many people as possible. It just launched a few days ago but I thought you might want to know about it. It?s on the app store: ThaliMe and we?ll be releasing an Android and web version in the near future.
Many thanks for your attention and keep up the great work!
11 November 2014
Comment:
I have a child with thalassemia major, a blood transfusion every month to be, while I come from a poor family
Help me Please,
countries: Indonesia
bank name: BNI
Account Number: 0268122446
Account Name: sugeng
countries: Indonesia
bank name: BNI
Account Number: 0268122446
Account Name: sugeng
31 October 2014
Comment:
Dear Friend,
Glad to get your contact information!
We supply dry apricot with good quality and very competitive price.
Hope to be a partner of your company!
Sample will be provided if needed.
Email me or just call me directly. Thank you!
Best regards,
Candice
30 October 2014
Comment:
Dear sir
Asslamualikum and greetings
I have come to know about you and your whole activity regarding beta thalassemia major by the internet and I have visited your websites and blogs several times. I am quite impressed with your activity and works for the entire thalassemia patients around the globe . I live in Chittagong which is a small town of Bangladesh has got no up to date medical facilities at all, we have to visit our capital Dhaka to discuss with the renowned doctors of our country . I have discussed with 4/5 renowned doctors of our country about my 10 years old daughter they have given me several observation which I followed correctly doctors removes her spleen and removes some stones from the gall bladder few months back, she has been given 200ml blood regularly . Now after seeing your websites and blog I thought if I contact with you and if you see my daughter?s prescription of the different doctors you may provide some advisory help to me which I will be very grateful. Please inform me if you please how I possibly send my daughters prescriptions to youI please send me a feedback to quench my knowing. May God bless you .
Thanks.
I have come to know about you and your whole activity regarding beta thalassemia major by the internet and I have visited your websites and blogs several times. I am quite impressed with your activity and works for the entire thalassemia patients around the globe . I live in Chittagong which is a small town of Bangladesh has got no up to date medical facilities at all, we have to visit our capital Dhaka to discuss with the renowned doctors of our country . I have discussed with 4/5 renowned doctors of our country about my 10 years old daughter they have given me several observation which I followed correctly doctors removes her spleen and removes some stones from the gall bladder few months back, she has been given 200ml blood regularly . Now after seeing your websites and blog I thought if I contact with you and if you see my daughter?s prescription of the different doctors you may provide some advisory help to me which I will be very grateful. Please inform me if you please how I possibly send my daughters prescriptions to youI please send me a feedback to quench my knowing. May God bless you .
Thanks.
23 October 2014
Comment:
Hi Chun Hui,
I'm Cheng Hong, Hazel's colleague, and we have met during the video shoot and World Blood Donor Day at Sentosa.
I am on a project to create a thank you card for blood donors, which we will send out before December 2014, to encourage them to donate blood again before the year ends.
The thank you card will be in a post-card form, and so I would like to trouble you to write two to three sentences of thanks to these donors.
Please write the sentences in hand-written form, and scan or take a photo and send it to me.
Is it possible to do it by tomorrow? Thank you for your attention and sorry for the trouble!
Warm regards,
Lim Cheng Hong (Miss)
17 October 2014
Comment:
Hi.....
I'm imba from Indonesia, I've been a "thaller" since 6 months old..
Just wanna sharing with you, a thaller from other contry...
Do u have an instagram?
Just wanna sharing with you, a thaller from other contry...
Do u have an instagram?
17 October 2014
Comment:
Dear Sir,
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Look forward to hearing back from you.
Best regards,
Si Hai
15 October 2014
Comment:
Dear,
A lot of thanks to you.
Pls advice about the standard/perfect age to taking Hydroxyurea of a e beta thallassemia child?
Best Regards,
13 October 2014
Comment:
Dear,
my son had thalasimia he is 1 years 10 monht he put blood 2 weeks per time please suggest me how to get better than that
11 October 2014
Comment:
Dear,
When I saw the below line I'm really speechless and I've lost my all hope about my baby.If she take it after 2 yrs old I mean in early stage then the below possibility is same?
Have you any information dear? Pls help.
"Hydroxyurea may affect fertility (your ability to have children), whether you are a man or a woman."http://www.rxlist.com/hydrea-drug/patient-how-to-take.htm
29 September 2014
Comment:
That days not so far when may you wil have a sweet and cute baby who will be completely full with good health.joy and happiness....and may my baby will be enjoy her life with full of joy....
Best Regards,
23 September 2014
Comment:
Is al thala treatment s free??
23 September 2014
Comment:
Thank you so much.
I already talk to my doctor about use of Hydroxyurea. He advice me now my baby is only 1 year old , when she will be 2 years old then Hydroxyurea will be advice for her.
I'm just waiting for the coming good days.Have you taking Hydroxyurea?
I got all the information from your site.Now I regular follow it for any updating news.
When you will get time please advice me about Hydroxyurea and its uses.
May Allah always keep us well and good health...
Dear, have your parents hear about the treatment? Whats their feelings? May be they are soooo much happy !! Hope their wishes may come in true as soon as possible...
17 September 2014
Comment:
1 doubt. Whether ur hb count can be raised vit d help of healthy fud items? (Iron rich fuds) Or blood transfusion is d only way?
16 September 2014
Comment:
Thanks a lot. Are you interested about the said therapy. Will you take the one between the two.Will the therapy be available in the whole world I mean in Bangladesh?
If you take the therapy pls inform.Whats your feeling ? I'm so much excited..
Hope all the thalassemia patients will be completely cure ...
What a great hope...Thanks to my Allah....
Best Regards,
13 September 2014
Comment:
hi i am _________ from pakistan my son is thal major patient here in pakistan the cost of bone marrow transplant is $30000. i cant afford this cost can you help me in financial means?any required documention if needed will provided,thanks
13 September 2014
Comment:
How are you? Hope you are doing well.
If possible pls help me to know details about the following information-
Bluebird Bio Gene Therapy
Hydroxyurea Therapy
When it will be available in all over the world ?Pls advice.
May be the nice days are coming for all of us...
01 September 2014
Comment:
Brother my medicines is finished from 2 months I needed badly
20 August 2014
Comment:
Dear Chun Hui,
Glad that we managed to get in touch with you again! As what we said over the telephone, here are the details:
Lifeblood Centre is planning to organise a day out and lunch on 28 September for our beneficiaries at Gardens by the Bay, estimated time9am to 3pm. We would take you sightseeing and photo taking, and top it off with a lunch in one of the restaurants.
Lifeblood Centre will be visiting the Conservatories, the Flower Dome and Cloud Garden. We will also be having lunch at one of the restaurants at Gardens by the Bay. There is also bus charter from our centre at Bukit Batok to the event and back. Everything is sponsored by Promisedland Community Services.
Promisedland is glad to offer our tickets to you and your friends and acquaintances with Thalassaemia. We are giving each patient a maximum of 4 tickets for their family members and caregivers. You guys are free to contact me directly to give your particulars and inform us of the number of tickets you need. We will follow up with further details after that.
The last day for registration is this Friday, 22 August, before our office closes at 6pm.
Hope to hear your reply soon!
Thanks and warm regards,
Ashley
19 August 2014
Comment:
Pls advice the standard hb level for getting transfusion of a 11 months baby.
16 August 2014
Comment:
Thank you so much....thank you. But you know last week to still I am really passing a very worried and bad time for my baby. She is totally not interested about food. What will I do? Now I'm not giving her Zinc syrup. Whats her problem I can't understand? In my city there is only 1/2 Hematology doctor who does not give enough time to discuss any problem in details.
Lastly we always gave her transfusion at Hb level 7.00. But doctor now advice always maintain level 9.00. Her current Hb was before last 2 week 9.7. But she is not taking food except water / lemon juice...Both of we are really passing a very helpless situation....But our baby is very happy with her play, smile and her all activities is ok...All of we are getting tired to control her bcoz she is too much noisy...
Dear, what will we do? When we will give her transfusion?
13 August 2014
Comment:
Its really not easy to build up a baby in proper way. It needs too much patience.But if the baby needs extra care then its really not so easy.I always respect all of mothers in the world...
10 August 2014
Comment:
My babies age is now 10 months 11 days,current hb level is 9.7.But she is not interested to taking any food.What to do? Pls help ...(Daily I'm giving her 5 ml Zinc and Vitamin B complex syrup)
08 August 2014
Comment:
Hello I am Mrs Rina i have some important information to give to you which will better your community.Email me on mrs.rina.patel70@gmail.com
03 August 2014
Comment:
Urgent requirement of iron chelatin machine kindly state the price and how to buy
02 August 2014
Comment:
In a Muslim country Eid is our main religious festival.This is also public holiday in our Bangladesh and all muslim country. Yearly we enjoy 2 Eid festival.One of them is Eid ul Fitr and another is Eid ul Azha.This is our Eid ul Fitr festival next Oct '14 will be held Eid ul Azha.
27 July 2014
Comment:
Happy Eid Mubarak !!!!!
23 July 2014
Comment:
Pls whenever im havin menstrual pain is always painful which drug can i use
19 July 2014
Comment:
Thank you. I'm not taking any advice from any doctor. Whats your opinion may I continue the both to my baby? Is giving quantity OK ? May I giving her daily 2 Cod liver oil or 1 is enough?
Pls advice...
16 July 2014
Comment:
My friend was having bone deformities, fragile bones
16 July 2014
Comment:
Dear Goh Chun Hui,
How are you ? Please note I'm giving to my baby Zinc and B complex syrup (daily 5 ml ) and Cod liver oil capsule (daily 1 capsule) which contains:
Vitamin A 600 IU
Vitamin D3 85 IU
Vitamin E 0.3 IU and
Cod liver oil 0.3 ml
Please advice.
Best Regards,
11 July 2014
Comment:
Hello brother, can we asian join 4th pan european conference.
08 July 2014
Comment:
Thank you so much for your kind support and co-operation....
07 July 2014
Comment:
Please help.
My 9 months 10 days baby got total 4th times transfusion. When she needs chelation?
Please advice....
06 July 2014
Comment:
Thank you so much.That means spleen not enlarge for getting transfusion.
Am I OK ?
I was so worried about the topics. Thanks a lot .
05 July 2014
Comment:
Hello, Hope you are well. Please give me some idea about :
Why and when thalassemia patients spleen get bigger ?
05 July 2014
Comment:
Dear Sir
I need Desferal Pump. Please quote me with delivery time. My Son taking desferal 1.5g. Can this pump support this qty.
Please reply on my email. Thanks
04 July 2014
Comment:
i want a desferal infusion pump immidiataly in gwa .. tel me about & price.....
02 July 2014
Comment:
Right now I don?t know what to do and how to get any Exjade , blood transfusion is very hard due to the country war and doctors is available to unfortunately
01 July 2014
Comment:
I am writing to you as a father since I am helpless and seeking your help and support
I am a father of a boy aged 11 years living in Damascus , Syria who was diagnosed as a Thalassameia major patients six month after being bornHe has being treated by blood transfusion every three weeks.
I want information Can I use Hydroxyurea in -Thalassemia Major
These findings suggest that hydroxyurea therapy may be helpful for some patients with transfusion-dependent -thalassemia and may reduce the need for blood transfusions
And we are waiting for your reply as soon as possible
With our utmost respect and many Thanks
01 July 2014
Comment:
Helo Goh, what is dosage in taking the exjade? Thank u!
25 June 2014
Comment:
I will be going to Thalassaemia camp at Penang in September this year. Will be fun then. Are u taking Ferriprox and Desferal? Have u done MRI?
23 June 2014
Comment:
Did u go to Abu Dhabi conference last year? How much is your ferritin?
21 June 2014
Comment:
Here is pump price is about 40 $SG
20 June 2014
Comment:
hello Goh Chun Hui i want o talk with you when you here please leave a massage for me thanks
11 June 2014
Comment:
Hey there! I ended up seeing your personal picture.
I like you a lot.
Why don't we talk!
I am a girl and just serious about a man
29 May 2014
Comment:
my daughter is thalassimec
28 May 2014
Comment:
Dear Goh,
Thank you so much for your quick reply. It is good to hear that we can expect such a drastic reduction in Iron levels in just a few months time. I will advise my friend and we will look into finding funding to try and make this happen.
Very good to hear that the government is helping you in your case! If you do come to Thailand sometime and wish to meet up you can send me an email. For now I wish you and your family all the best, and may you continue to be healthy for a long, long time :D
Kind Regards,
27 May 2014
Comment:
Hello Goh!
Thank you sharing your story and giving information to so many people. I found your site when looking for information about Thalassemia for a good friend of mine who is 30 years old and suffers from Thalassemai Major, we both live in Bangkok Thailand. If you would have the time for a short response I would be very grateful. If not I understand, no worries.
She currently is taking an oral chelating drug which the Thai Government makes to reduce her iron levels, it is called GPO-L-ONE (Deferiprone)... her iron level when last measured was 15,000g/dl (yes that's right 15,000 - she could afford blood transfusions but not the medicine for a long time). My question is how fast my friend could expect to reduce her iron levels if she were to add Desferrioxamine (also known as Desferal) to her current treatment with GPO-L-ONE which she takes 3 times a day... I understand that Desferal helps excrete excess iron through the stool while her current medicine eliminates excess iron through urine.
Since her iron level is SO high it would make sense to at least try, but the Desferal is very expensive and we'll have to find a way to fund it. The doctor, knowing she can't afford it right now simply says to stick with what she's taking. I'd like to see what I can to do help out and wonder how fast of an iron reduction she could expect to see on both medicines at the same time (As you did from 16-19 years old, right?).
Anyway I'm grateful to see that you are doing well and I wish you all the best. Thanks again for a great website, and keep healthy!
26 May 2014
Comment:
Please note, In Bangladesh our main food is rice.Is rice have iron or harmful for my baby?
Please advice me about potato and pumpkin.Is both vegetables have iron? If green vegetables have iron then what will I give to my baby?Because most of the vegetables are green.
Which vegetables have too much iron or harmful pls advice...
Best regards
24 May 2014
Comment:
Hy
i'm ______ from islamabad pakistan and patient of major thalassemia
now i'm 24 year old. i have to need of four times blood in a one week and also tests.These situations are very hard to face for me because i can't bear expense which are necessary for medicine and blood.
please reply me for your assistance i hope you will be helpful for me and also wait for you
24 May 2014
Comment:
Why ur blood line got round filter? Mine do not have. Is it better to have?
24 May 2014
Comment:
Thank you Goh!
I will look at the Thalasseaemia Society to see what funding opportunities are posted. I looked at the NIH (where I used to work), and it seems they are concentrating on gene therapies for thalassemia. I am going to make some inquiries because sometimes there are more open-ended request for proposals that may not show in a standard search on their site.
My inquiries with the thalassemia clinic in Dubai went well, They are looking at the information. I am not sure they are as well-versed in antioxidants as Dr. _____ and ______.
Dr. _____ has been testing various antioxidants with thalassemia for years. Most of his 300+ papers are available on pubmed. But he had never heard of Tempol before and was thrilled at the peer-reviewed articles he found. I know from personal experience and clinical use that Tempol is able to handle free radicals unlike any herb or even IV antioxidant I have used in the past. And it is a simple oral compound -- relatively inexpensive....truly remarkable stuff. I have a feeling it may also have a positive impact on MVC and hematocrit levels -- which is probably why Dr._____ suggested a 3 month clinical trial.
As for the Wordpress site, I posted some information on It is a general site for research information about Tempol. The crowd-fund page can be placed there and mirrored on thalassmia sites. I still have hundreds of Tempol articles and patents from various researchers to post -- and things like the video gallery to finish on the site. It was my first Wordpress site -- and it took me forever to learn the programming. I am a researcher, not a programmer.
Basically the site is intended to share information about Tempol so that it will eventually come into the mainstream. It treats so many conditions -- because most chronic conditions are related to oxidative stress. Since it has no composition of material patent, no pharmaceutical company is willing to spend the money on the approval process. The best hope is to get a clinical trial with an orphan condition and push fro approval so that it is available to anyone suffering with a condition related to oxidative stress.
My initial experience with Tempol was improvement in my health conditions that all related to oxidative stress. I suffered for a long time with a condition that caused excessive bleeding -- and really struggled with anemia for a long time. Tempol resolved the root cause of the problem -- and then I noticed all the other serious health issues I had disappeared as well. It has also been the main therapy my father uses for his Parkinson's.
So you can see I am very committed to this project. Most other researchers that I have talked to have long since given up on getting Tempol approved. They say it will eventually be approved for cancer and cancer prevention -- but if that were the case, it would have happened by now. The NIH has been holding the Tempol utility patents for cancer for years -- and nothing has come of it yet.
As for the crowd-funding, I think it would be important to have short videos from patients telling their life story. Probably 2-3 minutes would be good -- and they would have to be international. See the videos by families with mitochondrial disorder for examples This is another condition that would benefit from Tempol -- although the etiology of the genetics can be very individual so Tempol is potentially not as much of a universal fix for mito disease.
Can you post a request for videos on the thalassemia society site? Also - do you know of a good plug in for the Crowd-funding? I started searching for it -- and I got side-tracked with reaching out to other thalassemia clinics.
Let me know your thoughts.
23 May 2014
Comment:
Hi Chun Hui,
Thank you for accepting the invite to be featured in our video for World Blood Donor Day 2014. The video produced will be shown on the day of the celebration and it will be uploaded into our YouTube channel.
The ceremony will start at 10.10am and tea reception will be served prior to the start of the ceremony. You are welcome to join us for a light meal prior to the ceremony.
Please find below details for the video shoot:
Date: 24th May 2014, Saturday
Time: 9am-12pm
Venue: Bloodbank@HSA, 11 Outram Road Singapore 169078
22 May 2014
Comment:
I am thalassemia suffering boy. Can u help me?
22 May 2014
Comment:
bonjour je vie an france et les medecin on d poin de vu difairan sur la maladie donque je cherche dans dotre pays d information si sa ne vous derange pas de me dire se que vous saver jusqua quelle age on pe vivre ? comment on le vie ? les sinmtome? les tretement ? MERCI
21 May 2014
Comment:
Hi Goh - I saw your video and wanted to ask if you want to help me with a crowd-fund for a clinical trial to treat the oxidative stress of thalassemia with a recycling nitroxide known as Tempol. Two renowned experts in thalassemia , Prof. ______ and Prof. ______ have agreed to host a trial at their facility in Isreal. They have a large patient population with thalassemia and the means to test oxidative stress pre and post treatment. Dr. ______, the Nobel laureate who described first the role of nitric oxide in the body expressed an interest in contributing as did Dr. _____, who has been studying Tempol and other nitroxides for over 30 years. Tempol acts as SOD1, SOD2, SOD3 and catalase. It reduces free radicals, increases ATP production and improves immune function through improved cell-signaling. It is a truly remarkable compound which holds promise to reduce the cost of treatment and improve the lives of those with thalassemia. Conditions that research indicates would respond to Tempol include;
- cancer,
- ADHD,
- renal impairment,
- diabetes,
- metabolic syndrome,
- ALS,
- Alzheimer?s,
- autoimmune conditions,
- mitochondrial dysfunction,
- anxiety,
- asthma,
- TBI,
- CME,
- Huntington?s Disease,
- arthritis,
- bipolar disorder ?
- basically anything related to oxidative stress, immune dysfunction and/or misfolded proteins.
Most researchers who study Tempol are fully aware of this ? and most take it themselves for various conditions or simply for its anti-aging effect. ( For more information, see a pubmed search on Tempol and ROS [ Reactive Oxygen Species] -http://www.ncbi.nlm.nih.gov/pubmed/?term=Tempol+ROS ) At this juncture, all that is needed is funding. I have reached out to several organizations and am looking for grants for thalassemia. If you know of any organizations with funding, please let me know. If you are able to help get a crowd-fund page together on a Wordpress site, I would love the help. I am just starting with this ? and will need patient stories in youtube videos. Let me know if you are able to help. I am staying up late tonight to contact the clinical trial office in the UAE. I keep missing them due to the time difference. Hopefully they will have good news about funding. If your doctor is interested in Tempol, we will be happy to share the protocol. I look forward to hearing from you.
21 May 2014
Comment:
Hi Goh,
We made a cartoon for all you working folks out there.
Hey, we understand the plight of most organisations ? you invest millions of dollars in finding, training, and educating your people, and you don?t want to see that investment just walk out the door.
But what can you do (other than a little neural surgery)?
Check out our hilarious and full-color cartoon now. If you like it, stay and read the whole blog post. And if you like that, try out tibbr for a month. (It?s even on the house!)
And if you?re just dying to speak to the person who wrote this email, call me.
Best,
21 May 2014
Comment:
Ok thn how's goin on thr, process of BMT? Is it Success? Do u know smthng abt stem cell process? Okay.. Thx bt wana share wid u smthng 1 patient in our grp went 4 BMT age 10 or 11 yrs, vellur cityso wht do u think? Is he get success??
21 May 2014
Comment:
I found that Ginger is helpful for thalassemia patients.Can I use a little bit ginger in my babies solid food?
Please advice.
18 May 2014
Comment:
are you hemophilic ? or thelesimia
17 May 2014
Comment:
my son syed ahmad hassan thalassaemia paeistiems aeg 7 years
16 May 2014
Comment:
wht abt chelation? Klfer, ashunra, desirox, or desfrol?
16 May 2014
Comment:
Hi wanna ask u ur bt requirmnt?? Pr month 2 units or 3? N ur age if u don mind
15 May 2014
Comment:
15 May 2014
Comment:
Vit c I think no side effect,but from endometrosis group share into that while taking acid folic ,some might have heavy period n endo cyst grow fast too...i m x sure but acid folic good for womens fertile n motherhood too..do u take folic?
15 May 2014
Comment:
I just have an experimental what would b without it..I felt tired,insomnia, no focus just like something wrong if used to drink cofe daily n got addicted... but as minor Thal,this medication is a must ..
15 May 2014
Comment:
Hi, I am fatigue n tired without my folic acid,vit c n stem cell.latest hb11.3...y can't my body tolerate without it?during my operation for endometrosis,I wasn't transfusion n my HB 11.8 dropped to 10.3...I'm on stem cell,acid folic n vit c...for 1week b4 op n after pos...
14 May 2014
Comment:
Please note,Last 3 times our baby got transfusion when her HB level was 7.00 or 7.02.She needs monthly transfusion.But yesterday we are surprised when we received her HB report.Last month she had taken transfusion on 12-April-2014 after 30 days yesterday her HB is 11.50.Pls advice.
What is the standard measurement of transfusion?Per kg how much pack cell blood need?Pls advice.
Best Regards,
13 May 2014
Comment:
"Hi....
You sell these vitamins???"
12 May 2014
Comment:
Yesterday I was gone to a hematology with my daughter for her check-up.He advised no treatment need just only give her transfusion and only folic acid 2.5 mg, no vitamin.He also advice if 5 times transfusion complete then check her iron level and she may be need iron overload treatment.She have to get desferal injection with portable pump of in 5 days of a week.(As I know may be Desferal in oral is available.Is it effective from the pump system or not?)
We are really confused because our earlier doctor of Dhaka told that no treatment required for iron upto 4years old after that it will be need.Please advice.
As my baby needs monthly transfusion is it major?Is hb e beta thalassemia not cureble in future?Please advice.
Best Regards,
11 May 2014
Comment:
Thanks for understanding. You know we are mother !!!!!
What is child now I realize sooooooo..
I'm a Chartered Accountant and after 10 hrs every day when I get back to home from my job and see my girls smiling face than I feel to keep her that- it is my life,my whole world my everything...
Always best wishes to you...
11 May 2014
Comment:
Dear,
Actually this procedure hurt me because last Feb'2014 when we go to Dhaka with my daughter for her treatment purpose then I ask the Doctor about my future child.Then he advised me for fetal blood test and said if the next baby also affected then we will arrange everything for miscarriage the baby then I told him Sir this is my child and the future one also mine too so its impossible and then continuously my eyes fulfill with water.That pain today I also felt when I see the topics. That's all.
Goh Chun Hui, actually the unborn baby have not committed any offence.Is not it?
Pls advice to control the situation not miscarriage...It will be my pleasure.
Thanks and best regards,
10 May 2014
Comment:
Thanks a lot to you. After receive your mail, just now I have no word but I'm feeling so much better.Thank you to you again.
Just now I wish and pray to Allah that your comments may come true in a life of my child-and I also want to enjoy the following wonderful time with my baby girl.
"As all these will be worth it, once you see your child grew up healthy, get married and have a fulfilling life."
I also got energy to know about your carrier and you are lucky to getting a sister.Happy Mother's Day to your mum and also best wishes to your family...
May Allah always help you as you...
Best Regards,
10 May 2014
Comment:
Thank you for your kind help
10 May 2014
Comment:
Hello,
I am from India, I came to KK women hospital to enquire about transfution as I want to study in Singapore. They does not accept adult thals who are above 18years.Pleasee help and advisewhere can I take a transfution apart from KK women I have been to Singapore many times and I just love the place
08 May 2014
Comment:
Dear Goh Chun Hui,
Thank you.Can I get some advice from you?My baby is now 7 months and I'm giving her solid food such as rice.Is it harmful?We observing that getting transfusion than when we check her HB after 3o day every time it is HB 7.00.Getting transfusion at HB level 7.00 is it safe?According to your sight can I give her vitamin C and Vitamin E tablet? How much?
Goh Chun Hui, how old r you now and what about your education?Have you any brother or sister?Always my wish was if I have 3 child!But this is my 1st baby and we are really very much shocked and confused when we know that we are carrier.
Please send my respect to your parents for their patience.Now I understanding whats the feeling all of parents who have to face all problem with patience.
Best Regards,
07 May 2014
Comment:
Dear Chun hui Goh,
Thank you for your reply.Have you visited the following sight.Is it dependable or reliable pls advice.
see-http://www.drpbanerji.com. Pls help I want to take decision about my baby..
Best regards,
05 May 2014
Comment:
Hello Goh Chun Hui,
How r you now? Hope u are fine and everything going well .
Its me __________, my baby ______ has been suffering from hb e beta thalassemia and she is only 7 months old. So I need a diet or nutrition chart for her. So I required from you a proper guideline..
Thank you
05 May 2014
Comment:
Thanks for the Suggestion MR Goh Chun Hui
But as I am new for this?could you help me more..
Like I have no idea of crono or angel?
Pls forward me a link
Thanking You
04 May 2014
Comment:
Hi there
Im in search of a new desferal Pump for my brother..
im finding it difficult to find as it is not available in maldives
03 May 2014
Comment:
02 May 2014
Comment:
How r u Hui? How is your health?
29 April 2014
Comment:
Wat u using to maintain h.b n increase h.b?
25 April 2014
Comment:
Dear visitors of Hospitalar 2014,
As we plan to take part in Hospitalar 2014, (May 20th - 23rd) in Sao Paulo, we are pleased to invite you to our boothno. B44 in Korea Pavilion.
CERAGEM Medisys is a Korean manufacturer of POC and IVD products (measuring system for blood glucose, hemoglobin, lactate, HbA1c and CRP).
20 April 2014
Comment:
Bro you have a whatsapp, wechat, line or kakao? Please add me
10 April 2014
Comment:
My son is 20 months of age .at first he was transfused on 4.12.2013when he was 15 months of age.then he was feeling good.but he became very weak in the last of march.in the hba test doctor say that he has thalasamia major while other doctor says that he has thalasamia intermedia we transfused him after three and half month.plz explain what is his problem
09 April 2014
Comment:
Dear Thalasemianme, thank you for accepting me as a face book friend . let me introduce myself. I am a volunteer o Red Cross movement and have worked as Secretary for 11 years. i have donated my blood for 117 times. i am interested in eradication of thalasemia from my country and the entire world. in this connection if you are interested i will be happy to share my experience .to spread awareness on the subject of thalassemia i have written a story book in English which can be available on payment of INR 150+postage .
08 April 2014
Comment:
Hey,
We are a Chinese printing company, offering products like catalogue, brochures, magazines,
memo pads, stickers, boxes, bags and any other printing items.
With the strength of high quality but low price, we win customer's favor praise all over the world.
If any item meets your interest, please keep me posted.
Regards,
Sales Specialist
SHARP BASE CO.,LTD CHINA
03 April 2014
Comment:
hmmm i hemophilic sir
02 April 2014
Comment:
how long are u fighting for Thalassemia?
02 April 2014
Comment:
what level of Hemoglobin should maintain of my 1.5 yrs child to build good physical growth?
30 March 2014
Comment:
have you ever been transfused irradiated rbc ?
27 March 2014
Comment:
I love this post very much.please keep sharing of knowledges with us.
25 March 2014
Comment:
Hi there. My 2 year old son is suffering from thalasamia major. Uptill he has received almost 22 transfusions and his currently ferritin level is around 1600. We are giving him "Asunra" medicine, a local replacement of XJADE. This medicine is also developed by Novartis. But i need to buy this pump as well. Can you kindly guide me from where i can get this iron chellation pump for desfral. Thank you.
Regards,
_________
Lahore, Pakistan
23 March 2014
Comment:
"hello,
my daughter diagnosed thalassemia major plz guide us for BMT, we are from mumbai.
22 March 2014
Comment:
Is the old pump or new crono pump same or work on different way pls confirm thanks
22 March 2014
Comment:
hi dear can i ask you sumting about the AJ 5805 Syringe pump , i am curious about it. wat is dis thing about / use for? benefits on you ? thank you
22 March 2014
Comment:
Dear Members,
Dear Friends,
Thalassaemia International Federation (TIF) is organising a Photography competition for the year 2014, with the aim of creating awareness about Thalassaemia, in the context of the World Thalassemia Day, celebrated each year on May 8.
Participation in this contest is open for all ages, and all countries across the world
Deadline
The deadline for the competition is Friday, April 18, 2014.
Subject
The subject of this drawing contest is based on this year?s theme for the 21st International Thalassemia Day, which is "Economic Recession: Observe ? Join Forces ? Safeguard Health"
The prizes granted by Thalassaemia International Federation for this competition are the following:
The first winner - $ 500
The second winner - $ 300
The third winner - $ 100
All others will be given a certificate of participation.
21 March 2014
Comment:
Hello there my friend hope all is well with you and family I am having a hard time typing here I forgot my glasses and it is so blur. Hope you excuse me for the mistakes i have made in my spelling ok. God bless and keep you and loved ones. Friendship with harmony and melody, Music draws friends from all over keep the music
21 March 2014
Comment:
my pump is fine.. but she's having problem with hers.. and had been eyeing the chain pump.. so thought will check how much it costs and all.. and found ur picture with it
19 March 2014
Comment:
Dear valued partners,
My name is Sonya Cha. I would like to introduce myself as your new contact person.
CERAGEM Medisys Inc. is a KOREAN manufacturer producing:
- Blood Glucose Monitoring System
- Point-of-Care HbA1c / CRP Analyzer
- Hemoglobin Screening Device
We are currently looking for a decent distributor in your market who can represent
our innovative GDH-FAD enzyme strip (CERA-CHEK 1070) for the measurement of blood glucose.
We want to establish a long-term partnership to penetrate the market.
Should you have any queries, please do not hesitate to contact us anytime.
Best Regards,
Sonya Cha
19 March 2014
Comment:
Hi
We r working on thalassemia in bangladesh
What do you do about this??
17 March 2014
Comment:
Dear Sir,
Having a nice day, we are one of the biggest Chinese goverment I/E companies, and we have good prices on Vitamin E series and Beta Alanine at this moment, and we hope can give you some updated prices to help you understand the market changes, the quotation for the below products as follows:
d-a Tocopheryl acid succinate 1210IU
Quantity:2tons
FOB SHANGHAI is USD93/KG
Delivery time:10working days
VE 50% CWS
Quantity:10tons
FOB SHANGHAI is USD19.8/KG
Delivery time:10working days
Beta Alanine AJI
Quantity:10tons
FOB SHANGHAI is USD9.6
Delivery time:10working days
17 March 2014
Comment:
HI DEAR WHAT ABOUT UR HEALTH
17 March 2014
Comment:
I will support your activity with my level best effort. Please don't hesitate to contact me if you need my help. You can text me in pm
16 March 2014
Comment:
How is your thalassemia patient condition
15 March 2014
Comment:
plz.Do't forget to NEPAL RARE BLOOD COMMUNITY (http://www.rareblood.org.np/) THANKS
14 March 2014
Comment:
will u come India at delhi confernce of thalassemia
14 March 2014
Comment:
Dear Mr.,
My name is Min Guo. I am a volunteer with the Human Health Project
(www.humanhealthproject.org),which is a free, volunteer based,
nonprofit,noncommercial, online peer-to-peer support resource that
helps people to obtain health information and learn from others with
similar experiences. Human Health Project (HHP) can be considered as a
connector between someone in the world with a health question and
someone else has the answer.
HHP has created a virtual space on the Internet to bring together the
experiences of people using many different forms of health care around
the world. Anyone with Internet access can obtain health information
not tied to any institution or commercial motive. In this way, HHP
empowers people to discover more conventional and complementary health
information in a confidential manner, as well as provides a source of
peer-to-peer support to people trying to improve their health.Research
has found for people with many chronic conditions with access to
health information and peer-to-peer support can promote beneficial
behaviors, including adhering to proper diets, obtaining timely
medical care, and understanding and completing treatment plans. HHP
will never sell anyone's personal information.
Human Health Project is always interested in working and partnering
with people and organizations committed to helping people. Human
Health Project will not be competing with you. Instead, HHP is trying
to develop positive synergies that will help more people around the
world. For example, your organization could post health information on
HHP's website and receive referrals through HHP from people seeking
your organization's information.
If this is of interest to you, we would like to open a dialogue with
you on how HHP could best serve your organisation and its members.
I look forward to hearing from you.
Best regards,
Min Guo
Human Health Project
http://www.humanhealthproject.org/
09 March 2014
Comment:
Not yt ar u grub tlsmia?
08 March 2014
Comment:
Hi, can u give me an idea if how much is the exjade youre having as chelator? Thank u.
06 March 2014
Comment:
want a thalassemia specialist doctor
06 March 2014
Comment:
Sir,
I want to know what is the cost of outside bone marrow donors? And how can I find them??
05 March 2014
Comment:
i want to buy infusion pump for injection
05 March 2014
Comment:
Sir I want to ask something about BMT
03 March 2014
Comment:
hye all...im new here...actually i want to know more about this Thalassemia,,,,im not the Thalessemia but i care n want to know. The boy 7 years old got this Thalassemia...pls help me
02 March 2014
Comment:
What's the difference between packed and washed?
01 March 2014
Comment:
Dear sir
My wife is Suffering From thalessemia. Plz provide ur Contact number So that we can contact U
28 February 2014
Comment:
hi, i'm from philippines... i just found your site few minutes ago... actually not done reading everything on it yet... but i just want to ask u if how did you know that your a thallasemia patient? my son just recieve his first BT last july 2013, from then he needs a BT once a month... but until now we're not sure yet if it's because of thallsemia... his doctors told me that there's a test to know if he has thalassemia but it is done after 4 months of blood tranfusion, in his case we can't reach the 4th month becuase after a month his hemoglobin goes down already and he needs to be tanfussed right away... it's been almost 8months since his first BT but until now we dont know what's the reason of his low hemoglobin... no one in our family experience any blood tranfusion, is that possible to have thallasemia alone in the family? last week we done the HPLC thalasemia screening, we rist his hemo to the lowest, it's been after 2months after his la st BT but the result we'll be later this march... it's mind buggling, we're the only one suffering from thallsemia in the family, and we dont know how to handle it...
28 February 2014
Comment:
i want to know that the treatment of thalassemia patient is possible in foreign country
20 February 2014
Comment:
Wats ur fertin is?
18 February 2014
Comment:
This Foundation is treated thalassaemia patient on free of cost. you are requested to please send us price of infusion pump.
17 February 2014
Comment:
Sir what can I do for my son ...
I M UNABLE FOR HIS BMT SO....
11 February 2014
Comment:
"I need to help for my son. He is sufering from thalassemia major. I need advice which food / fruits not eatting by him."
09 February 2014
Comment:
Today one patient diagnosis as thalassamia minor boy age 10 years has soft swelling at front of neck Any suggestion for him
03 February 2014
Comment:
good day sir/madam gusto ko lang po malaman kung magkano na po ngayon itong infussion pump for thalassemic patient.. at saan po ako mkaka avail nito. thankx poh..
30 January 2014
Comment:
did you know about the thalassaemia centres in ukraine, china, or phillipine because i am planning to study mbbs abroad next year so .... if u know please in form me
25 January 2014
Comment:
Thank you for taking the time and sharing this information with us. It was indeed very helpful and insightful while being straight forward and to the point.
15 January 2014
Comment:
Hello,
My name is Alex Martin and I am reaching out to you because I noticed you have a lot of helpful information listed here http://thalassemianme.
I truly believe this type of information will be a great benefit to your visitors, especially with the wide range of topics you cover.
Thank you and please let me know if you decide to add the resource.
13 January 2014
Comment:
i thought older people with Thalassemia can get cured too but that its just a little bit more of a risk. yes. i still dont know if we should take the 8/10 donor match or wait for a 10/10.
12 January 2014
Comment:
R/sir,
My baby(3.7years) suffered from beta thalassaemia. can you guide me about latest treatment to cure this disease.
09 January 2014
Comment:
Practicing good values is how we become great. The true peace and love comes from the inside of our hearts. Do not fear to spread love around you, only cowards are ashamed to show their true essence.-PEACE N LOVE MESSAGES
04 January 2014
Comment:
Dear Sir,
Sincere Greetings!
We provide regular workshops(English/Mandarin) to educate patients on the management of Thalassemia.
Aims of workshop:
- To identify clinical research needs and trials to reduce the burden of disease.
- To love and provide moral support to all persons with thalassemia and their family members.
- To list out useful recommendations for patients to live healthily.
Each attendee will get to taste a glass of Nutrition Drink(researched in Germany, manufactured in Switzerland) during the interval.
Please feel free to contact us.
We look forward to hearing from you & hope to work hand in hand with you.
26 December 2013
Comment:
Dear Sir,
Greetings.
One of our friends son who is about 16 years old is affected by Thalassemia since his birth and till date he is under medication and has undergone one surgery and is due for another, we as a common man don't know what is happening inside that child and how long he will be suffering with this, the most important thing here is this child's father is a small time tea vendor who struggles to meet the ends but courageously trying to support and over come all the odds of his son. Kindly let me know if there is any possibility for treatment and help for this boy.
Awaiting to hear form your end with high hopes.
regards,
22 December 2013
Comment:
Great things you?ve always shared with us. Thanks. Just continue composing this kind of post. The time which was wasted in traveling for tuition now it can be utilized for studies. Thanks for this knowledgeable blog.
21 December 2013
Comment:
she is just 4 years old thats y she is afraid of injection and all she is crying like anything..pls goh pray for her ...god bless u
20 December 2013
Comment:
Respected Sir
I have belong to Poor Family in sri lanka. Dear Sir Major thalassemia patient my sister hiqma banu last 15 years.pls help me about this matter. Sir i have belong to very poor family, and i could not afford this expenses please help us this issue. I have need to Desferal Infusion Pump (medis infusa d.slt). I could not afford this pump and not available in sri lanka. I am very thankful to you please help us. I am waiting your reply thanks. GOD give you long life and your whole Family
19 December 2013
Comment:
Hey man
My name is ______ and I been watching your videos because my daughter has Thalassemia major too, and actually today is her first day starting on Exjade. She just turned two years old. and i just wanted to know if you have any tips on her taking them. and how long have your had thalassemia major??
19 December 2013
Comment:
hey Mr.hui
can you plz tell me that how can a thallsemics can grow as a normal one
14 December 2013
Comment:
"Hello i am an italian boy talassemico,i am following chelation therapy with exjade ,i wanted the info on how to buy a mixer for exjade thanks."
13 December 2013
Comment:
"i think if there is any solution for these patients except transfussion it will be great
i want 2 know that when and which solution will replace blood tran..."
11 December 2013
Comment:
Hey,
It would be excellent if you added a live chat feature so people can interact around your content. Chatwing is a free chat tool you can put on your site or simply create your own chat room link like chatwing.com/MyGroup.
Check it out here: http://www.chatwing.com/
Check it out here: http://www.chatwing.com/
09 December 2013
Comment:
I want 2 know the diet chart of major thelessimia child age.-4:for my daughter
04 December 2013
Comment:
i drop by to BP clinic for info of DNA screening Alpha Thals but what surprised me they have to check with BP clinic based in Singapore bcos only have DNA screening Beta Thals! As my dignosed done by General Clinic lab but took long waiting result more 12 mths! i wonder if u know any like mine i wish to share with them n to know what HB level - rare thals trait,K.I.V. for transfusion...
03 December 2013
Comment:
I need thala sets. Here in pakistan not available
24 November 2013
Comment:
My baby (3.7years) suffered from beta thalassaemia.please give latest information about treatment.
22 November 2013
Comment:
How can I purchase one of these mixing cups? Thank you
13 November 2013
Comment:
sometime I vomit after taking desirox
10 November 2013
Comment:
Hi, would like to check with you, does DR at Singapore advise Thalassemia's patient whom are 20++ for Spleen operation?? And how many % chance?
10 November 2013
Comment:
My second daughter have thalassaemia major .She is 5 month old baby .Please let me know about the permanent treatment for thalassaemia major
08 November 2013
Comment:
My only baby (10 Yrs old) is a patient of Thalasseamia (Major). we are fighting to get rid of her problem. Pls help.
Thanks & Regards
07 November 2013
Comment:
Dear Chun Hui,
I'm very impressed with your work and determination in fighting against Thalassemia. You are doing a wonderful work. I pray to God that all Thalassemia sufferers and others who suffer from similar health issues get cured as soon as possible.
I can understand how much pain you might have had already by now by having transfusions, iron chelation, medications and tests. One day you'll get cured.
I've a son, 11 years old, he also suffers from Thalassemia major. I can understand the pain and fight Thalassemia sufferers have to do.
My son takes EXJADE 750gm for iron chelation in UK, with regular blood transfusions every 3 weeks from birth. Previously he was on Desferal injections and also had Ferriprox sometime for iron removal.
May you live long. God be with you.
Kind regards
A well wishers
02 November 2013
Comment:
I went to buy aDesferal-Infusion Pump Machine.how can i do it.sent the foto and product the contry name detail pls.as soon as possible.
11 October 2013
Comment:can u pls tell me that how to increase my daughter hight bcos her hight growth is very less..and how much hemoglobin i have to maintain for her...
10 October 2013
Comment:
I'm looking for undergraduate scholarship in Singapore. But unfortunately there is no one can accept. Is there any undergraduate scholarship for thalassemia patient? I worried about the treatment cost in Singapore. That's pretty expensive, I think.
07 October 2013
Comment:
hi this is poonam from india actually my daughter having beta thallasimia major she is just 4 years old.can u pls suggest me somthing that we can avoid blood transfusion and she having splin also pls if u have any suggestion pls pls pls tell me bcause its too pain full for her.
07 October 2013
Comment:
pls send me friend request because i required your help pls add me in your account
can u pls suggest me that how will reduce inlarge splen
06 October 2013
Comment:
im dr. ____ from india im having chronic iron overload due to multiple transfusions with srum ferrittin of 2900 due to esrd and now on continous dialysis twice a week for 4yrs i would like to know more about the desferal pump in chronic iron overload.
27 September 2013
Comment:
Hi,
Can I know where to do the blood test for alpha thalassemia minor for my husband?
As I did done the test on 2003 and have been confirm I'm alpha thalassemia minor.
I would like to know where can I get more detail to prevent anything happen if we would want to have baby?
Hope to hear your reply soon.
B.Regards,
20 September 2013
Comment:
Sir/mam
i want information regarding cure of thalassemia major, is there any successful cure. U r Opinion on hydroxyurea therapy
29 August 2013
Comment:
I have a 15 yr old daughter who is Beta Intermedia. I cannot write all of her predicament here because it will take up much time and space. I seen your videos on you tube using the crono chelation pump.
May I ask how do we go about ordering it and how much would that cost?
My daughter has high ferritine level 11000. None in the heart or kidney but has high iron overload in her liver.
Please advise.
Thank you
15 August 2013
Comment:
Good Day!
Iam a 30 years old woman from Philippines, and i was diagnosed
with Beta Thalassemia traits recently, im suffering with pain all over the body
and tiredness and i cant do my work normally and i want a better, healthier and
longer life.
Hope for your response and hoping that u can help
me to treat my thala.
Thank you so much
24 July 2013
Comment:
Hello. My name is Sonya Cha, Marketing team from CERAGEM MEDISYS.
We produdly launch a multi-parameter device for Glucose - Hemoglobin - Lactate for the first time at AACC Clinical Lab Expo 2013.
20 July 2013
Comment:
From bangladesh. Where l buy desferal infution pump.
09 July 2013
Comment:
my son is 8 yrs old.. he easily got fatigue and fever from last 4-5 months.. he is even putting on weight.. doctor advice me for some test..
HB - 11.4
Iron - 112.4 mcg%
Hb A level - 93.3%
Hb A2 level - 5.6 %
F- 1.1%
A1c - 4.9%
A2 - 5.6%
Is he thalassemina patient... I am worried...
30 June 2013
Comment:
hi. i am thalaseamia patients. 9 mounts years carries thalaseamia patients.now my 34 years.i want better life lead in thalaseamia.
29 June 2013
Comment:
Wants a make complete setup for 50 patients of thalassemia patients needs detail of equipment's.
12 June 2013
Comment:
My baby _______ she is suffering from thalassemia major since 1 year. Now she is 1 year 4 months old.
05 June 2013
Comment:
Hi Goh Chun Hui,
My name is _______. I'm from China. I graduated from University of Cincinnati last month. Now I'm working in Live Well Collaborative(http://livewellcollaborative.org/ ). We are currently working with Cincinnati Children's Hospital trying to come up with innovative solutions to improve teenage patients' medication adherence.
Those patients are Sickle Cell Disease patients. Some of them are having problems taking their medicines, like Exjade or they avoid coming to clinic visits.
Right now, we are at research phase, we interview patients, read articles, talking to care providers trying to understand our patients better, such as their problems, thing they like or dislike about medication, etc.
Yesterday I watched your video sharing how to take Exjade and you experience taking Exjade from Youtube. I was impressed. I learned a lot from your videos. I think you are a very good at your medication and you have many strategies managing that. I wonder if I can email you some questions about medication adherence or talk to you sometime(like facetime or skype)?
Thanks,
______
Research Associate
Live Well Collaborative
2728 Vine Street, Cincinnati, Ohio
05 June 2013
Comment:
Respected Sir,
Dear Sir i have request you that my nephew Syed _____ is Thalassemia major Patient Last 14 Year. Dear Sir i have need the Desferal Infusion Pump. Dear Sir i belong to very poor family and i cannot afford the price of this pump. Once agian i request you that please you give us Desferal Infusion Pump then i continue the treatment of the patien. I am very thank full to you, GOD give you long life.
Thanks & Regards
17 May 2013
Comment:
"i want to know more about the treatment ,as my nephew is having this problem.
thanks."
05 May 2013
Comment:
"which is the best iron chelator, desfrroximine or ferioprox?"
27 April 2013
Comment:
Hie... I'm from India .. And I know a boy who is suffering from thalassemia major.. The financial condition of his patents is not as such they could provide the cost of operation .. I want to help this boy and so want to know if I could get any financial aid for this purpose ..?
27 April 2013
Comment:
Dear Sir /.Madam,
Thank you for making such a informative site, in regards to the same my son 12yrs old is a thalasimia minor, with hemoglobin of 8. He is very weak and gets ill very fast every 15days he gets viral cold n flu etc.
Here in mumbai some dr told me that minor thalasimia can be cured. is it true?
And if yes what test should I do and which will be the best Dr for my son 12yrs onld in Mumbai so that I can show him this problem.
Please your urgent reply on this shall be appreciable.
Regards.
22 April 2013
Comment:
Hi Goh Chun Hui
I am trying to get some Canes green tea from Malaysia
20 April 2013
Comment:
Hi,
My name is ____ and I am a beta Thalassemia major patient, I have been struggling with this disorder my whole life and shortly after I was diagnosed, my sister was as well with the same exact trait. I have written a book and it is going to be published soon ( in the next couple of weeks) and I am really hoping for it to get out there and perhaps inspire or help others.
I would really appreciate it if you can support me :)
27 March 2013
Comment:
Best of luck!
25 March 2013
Comment:
I m from india...and thalassemia major
My height is 5 feet and my weight is 41 kgs...sir i just want to know that can i or thalassemia patients take weight gainers supplements...sir plz rply me as soon as possible
08 March 2013
Comment:
02 March 2013
Comment:
How can I cure Thalassemia Minor?
12 February 2013
Comment:
i am 16 years old and i live in india. now my chelation's going well but now i want to go in canadian university for further studies and i am a thalassemia major so what should i do about my blood transfusion???//
25 January 2013
Comment:
may i know the price of desferal tablet and where it is made in? my daughet is major thalassemia
25 January 2013
Comment:
Dear Sir/Madam,
I am from Curas Ltd., a UK based company which is located in Penang, Malaysia, that sources high quality healthcare and medical products for use in the medical industry in Europe. Please visit our website at www.curas.com to know more about our company.
We are interested in IV luer lock stoppers (combi stoppers). Do your company manufacture such items?
You may find detailed information in the enclosed EXCEL file. Enclosed photo shows a sample of the products we are looking for.
Please provide your best MOQ quotation prices FOB nearest international port in China as well as your delivery time.
Regards,
Curas Ltd.
18 January 2013
Comment:
Hello Sir,
My name is ________ from India , My 5 month old daughter has diagnosed with Beta thalassemia Major . Can you please help us in identifying the permanent solution of on this and suitable for KIDs
3 January 2013
Comment:
My two daughter are suffering from thalassemia by borne. i am a poor cityzen from bangladesh and is unable to bear the huge medical cost of my two daughter. if there any organization or any source help my daugthter's medical cost, please let me know. i can't let my daughter's die. they need help.
30 December 2012
Comment:
May I know the price of desferal infusion pump and where it is made in?
03 December 2012
Comment:
My twins son reruired desferal pump. How can i find same in India.
24 November 2012
Comment:
Hello Dear
My name is Lilian, I got your contact details in this site (https://thalassemianme.webs.com) and I'm interested in knowing you and being friendly with you. I would appreciate if you can reach me through my private e-mail stated below so that i will send my pictures to you, so we can get to know each other better.
I quite believe that we can start from here since it takes one to know someone. I understand that race or distance does not matter but loving and caring matters a lot in life. I can not wait to hear more from you soonest.
Sincerely,
28 October 2012
Comment:
Dear Sir,
My daughter is normal and has proposal for marriage from a boy with thallasemia minor.
Kindly guide me on followings:
1. Is this marriage possible?
2. What is the survival time of patient with thallessemia minor?
3. What pracuations are required, if marriage takes place.
Thank you in anticiaption,
Rajendra Jani
23 October 2012
Comment:
I am a 65 year old male that has thalassemia minor... I also have tinnitus .. my Dr. recently recommended taking A B- Complex that might help the tinnitus. Will the iron effect my thalassemia.
19 October 2012
Comment:
Hi,I would like to ask a favor.my sister diagnose ''Thalassemia minor''my question is what is good for her.hope you can help my sister.Thank you so much and highly appreciated
5 October 2012
Comment:
hi,
I am from Cambodia country. I saw your animation video in youtube about gene therapy for thalassemia in 2016. This is the link:
http://www.youtube.com/watch?
Is it true? Will there be gene therapy by 2016? I really want to know. Please let me know where can i find the information about the progress of gene therapy.
Thanks
3 October 2012
Comment:
Hi my name is karina and i'm indian and i am thallasemia minor patient. I like to know what food i can eat and what not please reply asap......thank you
14 September 2012
Comment:
Hi there,
So happy I found your site!!
I just bought expenssive vitamins/supplements/minerals....they contain iron though and I read that you say: don't take iron. Can I have this pills? Or will they only harm me?
Also, how much acidf olid should I take?
Thanks a ton for your help. I'm always afraid to take iron but all healthy supplements contain iron. How much can I take?
13 September 2012
Comment:
I have a Desferal infusion pump, its not working, need to get it serviced, please help me with the service center details.
26 August 2012
Comment:
hi iam thalassemia patient please help me
24 August 2012
Comment:
Hi:
I am a Malaysian working in SG, holding SPR currently. Me and my gf are having alpha thal minor, thus we would like to consult a genetic counsellor on our case. Do you know any of that? Thanks.
Rgds,
22 August 2012
Comment:
Helo,
I would like to know iron chelation pumps and which one is the most cost effective one. i already know about crono and Angel pump. Any recomendations?
Thanks
Regards,
3 August 2012
Comment:
Hey, I wanted to start a blog as well about Thal. and my experiences as a women living with it. I was wondering if maybe we can connect and share our blogs. This is the first time i'm doing this, kind of nervous, but I think it will help me and I hope it helps others too. Let me know what you think!
2 July 2012
Comment:
my son is thalassemia major the desfral pump is not working so pleas give me the adders wear i repair it
23 June 2012
Comment:
Hi sir, this psnt is vry sris pls contact me
11 June 2012
Comment:
i'm thalassemia mejor
23 May 2012
Comment:
I was diagnosed with Hemoglobin H disease... nearly is that the Thalassemia A?
With then, I want to focus on the food I take, coz there were cases I cant control of my iron intake. What shall I do then. Ferratin test is too expensive here in the Philippines to take time to time. What advice can you give me to treat this or any related materials to share with. Thanks :)
17 May 2012
Comment:
What is no cure for this disease
5 May 2012
Comment:
Where can i buy Desferal Infusion Pump Machine? Please let me know ASAP. Thank you very much!
27 April 2012
Comment:
Hi
I am thal from Bangalore Do you have any latest Video for Thal awareness. I require one urgently
Regards
1 April 2012
Comment:
Nice seeing you sharing your life experiences.
I am studying on Major Thalassemia for my work. I am a social worker from a non-profit organization and we are looking to explore to help the Thalassemia patient who have financial difficulty in their medical expenses. After reading your website, i understand that thalassemia patient required weekly blood transfusion, regular MRI scan, Ferriprox tablets and Iron chelation Pump.
The hospital MSW provide Medifund support for the lower income patient. Does Medifund cover on the above medical expenses? How much does the above medical expenses cost and how regular does the patient require to do MRI scan and blood transfusion? Which hospital have the most Thalassemia cases that we can write in? Crono pump is very expensive, how does the lower income patient purchase the pump?
24 March 2012
Comment:
We are looking for infusion set types used with desferal pumps; we need to have manufacturer details to start business. Your advise will highly be appreciated. Thanks.
20 March 2012
Comment:
Sir
My daughter who is 05 years old is patient of Beta Thalasseamia Major.
Would help me to bear her transfusion expenses.
I will be very kind of you.
God Bless You
Regards
20 March 2012
Comment:
hy there,just wondering hw cn i get via online the syringe pump?my baby has been diagnosed thal major since last year n nw is frequently transfused once a mth.the doctor currently asking me to buy the pump.hope u can help me.
16 March 2012
Comment:
Would you please inform us, where we can get crono?? How much for the price?
Thanks
16 March 2012
Comment:
Dear Sir/Madam, one of my brother's friend has thalesmia and needs desferal pump machine. I have no idea about these medical things. Would you please tell me in which country they are made and how much they are?
Thank you very much in advance.
8 March 2012
Comment:
My little 16-year's daughter is patient of major thalassemia. We have purchased iron removing pumps for despharal injections thircly, but these are now out of order. I am very disappointed due to their heavy cost. Kindly help to resolve these.
Thanks.
6 March 2012
Comment:
plzzz contect me,,,, i am thalassemai major patient
26 Feb 2012
Comment:
Can you please share more info relating to the consuption of WHEATGRASS IN THALASSEMIA MAJOR PATIENT.
Thanks beforehand Goh Chun Hui
Best regards,
13 Feb 2012
Comment:
i want to buy this..can u pls telll m e where its available in india,,,singapore or in bangladesh..hw can i get this...
28 Nov 2011
Comment:
How can I buy desferal infusion pump machune
24 Oct 2011
Comment:
saya seorang thalasemia mayor, saya ingin berkerja tetapi bnyak mendapatkan masalah apa lagi soal kesehatan. saya sekarang hanya bisa berada di depan leptop/ komputer. saya masih kuliah di jurusan teknologi informatika.
dapatkah anda memberikan saya pekerjaan??
saya ingin sekali berkerja untuk memenuhi kebutuhab medis saya setiap bulan,
terima kasih
hormat saya
7 Oct 2011
Comment:
I want to buy a desferal infusion pump machine. Could u help?
23 Sep 2011
Comment:
i am a 50 year old and have thal major. desforal, l1. transfused every 3 weeks, low around 9.8. treated in phila. pa. usa, self employed. just sold business after 30 years. Married & child. odopted.
20 Sep 2011
Comment:
very good site, you did lotsa'f effort. congrats:)
17 Aug 2011
Comment:
Helo
thalacimya pation
Majer
And the range of fertin is 11000 iu
Please help me how can I decreas the iron
14 Aug 2011
Comment:
sir
I please help me for buy the desferal Pump machine.I dont know the puchesing centre and price.
7 Aug 2011
Comment:
Hello Sir/Ma'am
I am a research scholar doing PhD in Biochemistry on topic of thalassemia from Jiwaji University Gwalior INDIA.
I want to aatend this workshop .Kindly let me know formallities for that .Thanks
2 Aug 2011
Comment:
hey ya !!
its nice to meet some one lik u who is interested in thalassemia..
i am a thalassemia patient. and i really to talk with u...
if u can plzzz reply to this message.
23 July 2011
Comment:
Hey,
Hope ur doing great. Just wanted to wish u a happy and colorfull life. My 3 year old is a thallasemia patient too so i can imagine how tough ur life must be.
loads of prayers for u.
:)
22 May 2011
Comment:
Hi Ms ___. Just wanna check with you. My boyfriend is suffering from Thal-major and requires blood transfusion every month. Just want to check with you if you know if work permits approval will be affected by this condition and if the Thal society is open on weekends. Also, do you happen to know if he could get his blood transfusion done on weekends?
13 May 2011
Comment:
We are a NGO in India and working for Thalassemia to provide thalassemia testing and counseling to children and their parents.
13 May 2011
Comment:
How frequent do you have to transfuse per year? Are your spleen enlarge?
And are you also doing iron chelation on a regular basis? Thanks
9 May 2011
Comment:
I keep reading in texts that thalassaemia is a HETROGENOUS DISORDER.... WHAT DOES THIS MEAN. pls Discuss the view that thalassaemia is a heterogeneous disorder
13 Apr 2011
Comment:
hi my daughter who is 6 years old got thallasemia and doctor suggested us to buy desferal pump to reduce the iron. we are in bangladesh and cannot find it here.could you please tell me where i can buy it from on line please.
11 Apr 2011
Comment:
I am in need of infusion pump for iron chelation through desferal (variable speed).Kindly send me the details and quotation at the earliest.
Also please indicate the procedure to delivery in India (New Delhi)
Best Regards,
29 Mar 2011
Comment:
my daughter juliana is 14 years old and has thalssemia is it true that patients have been cured through gene therapy i haven't heard this please give me some details
29 Mar 2011
Comment:
Hi ____ long time ago my parents had told me before i have thalassemia...i have not done any transfusion before but relatively i always feel tired. I hope to get in touch with you to find out more & is there anyway to enhance my health.
4 Mar 2011
Comment:
Greetings Goh Chun Hui,
I hope that this message finds you well. To begin, I must tell you that your "Thalassemia N Me" site is amazing!!!!! All the information that you have comprised is quite thorough and very informative.......thank you for this.
My name is ____, I live in Gatineau, Quebec, which is in Canada. I am a mother (53 years old) my son Jeffrey has Thalassemia major. He is 29 yrs. old and he is married with 2 children. He is wonderful, healthy, energetic and has worked hard and is in the restaurant business, he loves cooking! I have thal minor and his father also has thal minor. We had no idea that 2 thal minors would effect our childrens health. My doctor was truly uninformed and when Jeffrey was 18 months old he was diagnosed and he started on blood transfusions immediately. 4 years old we began desforal pump treatment and when he reached the age of 26 we were introduced to Exjade and he has been taking it every day since then. He takes 3 pills per day and mixes it into a glass of orange juice because it is extremely bitter. He also takes the same vitamins as you do and I don't allow him to take vitamin c with his meals because iron is not released. Instead he takes his calcium and tea when he eats because as you know this really helps in the elimination of iron. Do you think that green tea is better to drink than black tea? Please let me know. Also I cut in half the vitamin C pill which is 2 times per day 500 mg and is absorbed better by the body this way. Jeffrey goes for blood once a month and is followed up with the same testing, MRI etc. as you are. He had a splenectomy several years ago and had his gallbladder removed 3 years ago and he is very well. He is not like you because he does not do research into Thalassemia because I think he does not want to know too much and this is why I try to learn and study and keep up with all the latest news. I beleive the doctors here are not as good as Asia because I had to find out on my own about vitamins and amino acids when to take them and we have to ask our own questions. The doctors just tell us when to go for our testing and they tell Jeffrey that his is doing well. This really bothers me and upsets me and I am sometimes very frustrated. I am very excited about Gene Therapy for you and Jeffrey and all others as I am certain you must be too! Well I hope that I have not talked your ear off. In closing if you wish to see photos of me and my family you are very welcome to go to my Facebook acount.....you will find me under the name........ I am looking forward to hearing from you.
Bye for now,
Very sincerely,
2 Mar 2011
Comment:
hi,
my younger sister is suffering from thalassimia she 16 y she is taking exjade 500 mg she takes blood after 15 days she gets very weak, she becomes pale, her head aches we are not getting any bone marrow donor for her her blood group A+ . please it would helpful for us if you treat her please do this favour for us we tried in many places but no reply.
1 Mar 2011
Comment:
hi,I need some information about thalassaemia center in london
23 Feb 2011
Comment:
my client is after a remarkable quantity of desferal pumps.. please advise
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