THALASSEMIA N ME

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BONE MARROW (HAEMATOPOIETIC STEM CELL) TRANSPLANT IN THALASSEMIA MAJOR PATIENTS

Posted by Goh Chun Hui on December 12, 2012 at 4:30 PM Comments comments (0)


The only cure available for Thalassemia Major Patients currently is a Blood Stem Cell transplant from a donor who shares the same tissue type.


But unfortunately, most patients are not a suitable candidate. As they do not have a suitable sibling, a parents match or an unrelated donor to offer them the chance of life.


So the only hope of survival in Thalassemia Major Patients is to undergoes a lifetime regular Blood Transfusion. Which is a painful and tramatic treatment regime that imposes an enormous financial strain on the patient, and also on his or her family. Leading to future life-threatening disease/illness as a result of dealths in patients.


SHARING EXPERIENCE OF COPING WITH DESFERAL INFUSION

Posted by Goh Chun Hui on May 17, 2012 at 12:50 PM Comments comments (0)


EXCUSE PATIENTS GIVE TO SKIP/AVOID DESFERAL INFUSION


 

SWITCHING DAY 



Tomorrow, I will have my Desferal Infusion.                                                          

Tomorrow, I still have to wake up early for school      

I will be sure to have my Desferal Infusion tomorrow.         

Just one day wouldn't make much different, it shouldn't be a problem.



LIST OF REASON FOR THALASSEMIA PATIENTS DISLIKE HAVING DESFERAL INFUSION

 

  • Need to Prepare and Set up for Desferal Infusion

 

  • Injecting the butterfly needle, causing pain. Especially if it's inject on the area of the skin which is still swollening, Cause by improper inserting of the butterfly needle or the butterfly needle move around while you are sleeping.

 

  • Having to carry around the Desferal Infusion Pump at all time during the whole Desferal Infusion


 

LIST OF REASON FOR THALASSEMIA PATIENTS DISLIKE HAVING DESFERAL INFUSION


  • Affecting sleep quality

 

  • Uncomfortable sleeping with the Desferal Infusion Pump holding/hanging around your chest/body

 

  • Causing Redness, Swollen and Pain after Desferal Infusion. (Patients choice of what they dislike the most about having Desferal infusion)


 

IMPORTANT OF TREATMENT COMPLIANCE

 

  • Improve quality of life

 

  • Reduce the iron overload in body and organs (Heart, liver and pancreas)
  • Reduce the following problems of iron overload: Darker skin, muscle pain/cramps, physical weakness & delayed of puberty


 

STRATEGY 1

 

Beileve in achieving your goal through having Desferal Infusion. Only then you will find the motivation to keep yourself going with Desferal Infusion. Some Example: I will have to do my Desferal Infusion regularly, if I want to stay healthy, live longer, be stronger, be taller and prevent more complications to occurs. You will get yourself motivated, and may even do more days of Desferal Infusion that you had planned.


 

STRATEGY 2

 

Plan in advance, before the beginning of every week on which day of the week will you be doing your Desferal Infusion. It will not only help you not to miss out any day of your infusion, but also remind you which of these day, you had already done your Desferal Infusion.


 

TIPS

 

Mark the days, you will be having your Desferal Infusion on your calendar. Remind it on your phone or just anything that you will view it and remind yourself.


 

STRATEGY 3

 

Prepare all the list of items needed ready in advance for your next Desferal Infusion. So that you can save the step and just need to get your Desferal Vials from the fridge, and to start preparing. You can save some time and remind yourself that you have to do your infusion.


 

TIPS

 

Prepare the list of items needed for your next Desferal Infusion, on an plastic trap. All you need is to carry the tray around and put it beside you to start the injecting the needle. The tray can also be used for dispose of plastic from products,  cover of needle and alcohol swabs and empty the tray at the end of your infusion.


 

STRATEGY 4

 

Learn the proper way in preparing your Desferal Infusion. You will receive the full benefit of it. It will also prevent yourself from getting poke from the syringe needle, while preparing it.


 

TIPS

 

Learn from someone who had experience in giving Desferal Infusion. For example, Thalassemia Patients, Thalassemia Patients Family Member or Hospital Nurses.


 

STRATEGY 5

 

Learn the proper way to insert and remove the butterfly needle (Scalp Vein Set) from your skin. You can save the trouble of having to poke yourself twice while trying to insert the butterfly needle under your skin. As for the first time while inserting the needle, it might be causing you some pain, due to the same area on the skin is swollen or had inject on that area too many times. Knowing that will also prevent you from getting redness, swollening or pain during or after the infusion all the time.


 

TIPS

 

Learn from someone who had experience in giving Desferal Infusion.


 

SUPPORT & ADVICE

 

Support

 

Beside the motivation, you had given yourself. Support given from family members, relatives, friends, doctor or even nurses do helps in gaining back the spirits of doing their Desferal Infusion in patients.

 

Advice

 

I know it's hard on you. Desferal Infusion on a regular basis can help you stay healthy and live on without the worried on complications of iron overload.

 

THALASSEMIA: HOPE OR HOPELESS?

Posted by Goh Chun Hui on March 18, 2012 at 7:55 AM Comments comments (4)


Even now living as a Thalassemia Major Patient, I still consider myself lucky. Having the world-class healthcare in Singapore. Receiving proper consult from hematology doctor, having all the necessary treatment required like Laboratory Blood Test, Blood transfusion, Mri Safety Screening, Chelation/Chelaters, Supplements and Medications when needed. Not only that, medifund is there to help these patients who can't afford any of their medical treatment.


 

Unlike in some country, patients are less fortunate. They might not have the necessary treatment needed, as either their country might not have the resources or someone paying to provide or build these facilities.There are patients saying they don't have the chance to get proper iron chelation, causing their ferritin level to keep just increasing overtime.



What really upsad me is seeing and hearing babys, kids and childrens having to began with regular blood transfusion and deferoxamine infusion. Seeing both, children the patient and their parents upsad, hopeless expression on their faces without any smile that seen to imagine how their life will be without the money, proper treatment and having to take the pain continuing the treatment in order to survive. Thalassemia, hope or hopeless? The mystery will only be solve after the cure is available.

THALASSEMIA MAJOR

Posted by Goh Chun Hui on January 19, 2012 at 8:10 AM Comments comments (5)


Thalassemia major is the most severe form of Thalassemia. A person with Thalassemia major will require a lifetime of monthly blood transfusions. Patients usually have sign & symptoms and get diagnose within few months or early years of life.



Some Thalassemia intermedia patients might become Thalassemia major after needing to require more offen regular blood transfusions.The only cure currently for most Thalassemia major is bone marrow Transplant (BMT), but it require a matched donor and is best to be done during early childhood.



However the life span of Thalassemia major had been extended with proper chelater and treatment for patients.



Lastly, hope more good news will release in the near future on new treatment and cure for Thalassemia major (:


THALASSEMIA INTERMEDIA

Posted by Goh Chun Hui on January 15, 2012 at 9:15 AM Comments comments (2)


Thalassemia intermedia is a condition that is more severe than Thalassemia minor but less severe than Thalassemia major. The different between Thalassemia intermedia and Thalassemia major is that Thalassemia intermedia patients require lesser amount of blood or longer duration time between each blood transfusion section.



Thalassemia intermedia is more difficult to prevent and diagnose by screening before birth. As most Thalassemia intermedia patients only began to have symptoms few years after their birth.



Thalassemia intermedia might lead to bone and other problem in some patients. There is nothing to be done to prevent it, but parents need to know there are some risk if parents themself have the same medical condition. Make sure to bring your children to the doctor, if you realise they have any sign or symptoms of the condition (:

 

THALASSEMIA MINOR

Posted by Goh Chun Hui on January 13, 2012 at 10:45 AM Comments comments (1)


Thalassemia minor is consider an common condition around the world. A person with Thalassemia is unable to produce normal functioning haemoglobin in the blood.


However, Thalassemia minor patients normally live a normal life like anyone else. Although some patients are advise to have a higher iron content in their daily diet and also other supplements like folic acid. Fortunately Thalassemia minor do not require any blood transfusion, in order to survive (:


IS THALASSEMIA MAJOR PATIENTS SUITABLE FOR LASIK EYE SURGERY ?

Posted by Goh Chun Hui on October 3, 2011 at 10:55 AM Comments comments (7)


There are patient who are good candidate for LASIK eye surgery, and I am one of them. Just got my vision corrected recently through VISX Custom LASIK (Microkeratome) as my degree for both eyes are within the moderate range -4.00.



Whether you're a good candidate for LASIK eye surgery, you will need to undergo an initial or baseline evaluation by your eye doctor to determine if you are a good candidate. Also inform your doctor of any past and present medical and eye conditions. Medications you may be taking, including over-the-counter medications and any medications you may be allergic to.



Always inform your Thalassemia doctor of anything you intend to do or take, including LASIK eye surgery. More so your ophthalmologist consultant doing the Lasik for you will want a letter or memo from your Thalassemia doctor who knows your condition. Just to ensure you are safe for the procedure, as there will always be some risks in any surgery. Plus if anything goes wrong during the surgery, the ophthalmologist will be the one responsible for it.



Some ophthalmologist may even take it further by calling your doctor and inform regarding the surgery procedure that you will be going through. Once confirm that you are suitable for it, you can book for the time and date for the lasik surgery.



That's basically it, hope this post might help you a little if you are planning to get your LASIK eye surgery done (:

 

LIVING WITH THALASSEMIA ( MY OWN PROSPECTIVE )

Posted by Goh Chun Hui on May 30, 2011 at 6:35 AM Comments comments (6)


Hey everyone I am here to share with you guys on the topic Living with Thalassemia, on a patients prospective or at least of my own point of view.



Living with Thalassemia is always the toughest to me when I first having to accept myself as a patients. Receiving and having treatment for a lifetime which is painful both physically and emotionally. And that imposes a heavy financialand emotional strain on my parents and family.



The list of lifetime treatment of course are having monthly Blood Transfusion and the countless number of chelaters treatment plus these you can think of.



More so if you're around my age group, you have properly started with Desferal Infusion as your chelaters which might be the first thing you want to get rid off after getting cure with Thalassemia as I beileve you have in mind the reason.



When I am in my teenage years, like some of you guys now. I am always shorter in height as compared to my classmate and friends, and that always bother me. At that time, I always try everything that I heard that can make me taller Example: Drinking Milk, Doing Certain Exerise. And later I found out when it's time your body want to grow, it will grow. I always don't have much confident at that time as I can't faced myself as a person.



Until one day something really make me determined to change myself for the better. Which I don't expect that will happened to me this early in life, that my dad had passed away. At that time I am only 18. It takes forever for me to get through the anger and loss.



So how do I get through it ? That's a great question.



Beside thinking that life is too short for all that and now is my time on earth, if I want to do it that badly, I should be able to make it.



Therefore I started looking and trying quite a few jobs. Not going to lie, until now I still cannot get it done by finding one really suit me.



Getting a suitable job is always a major issue/concern amoung all Thalassemia Major Patients.



Why, why is that so ?



Firstly let's take a look on the view of concern on the patients prospective when applying for a job.


 

  • I am not be able to commit a full-time job as I offen have to ge for appointment at the hospital.

 

 

  • I can't take it, my body get tried easily.

 


 

  • What if my employer and others will think if I told them I have Thalassemia condition.

 


 

  • Now let's switch the angle and take a look at the concern the employer may have.

 


 

  • What if something happened to him/her while working here, I am the one who will be respondable for it.

 


 

  • What if he/she always on leave due to the condition and can't get the work done.

 


 

  • I should safe all the trouble by just employ a healthier person to get the work done.

 



Lately I had been building and working on my site on Thalassemia, which name THALASSEMIA N ME leading me in getting the Singhealth Most Inspirational Patient Award 2011 early march this year and so can everyone.



Ok that's it for now on sharing with you guys on living with Thalassemia, my own life journey as a patient. Hope you enjoy it (:

 

PREVENTING OSTEOPOROSIS IN OLDER THALASSEMIA MAJOR PATIENTS

Posted by Goh Chun Hui on April 23, 2011 at 10:45 AM Comments comments (0)


As you might know Osteoporosis is always a major issue/concern in older Thalassemia Patients. Of course everyone is concern about the condition "Osteoporosis",don't get me wrong. But Thalassemia Patients should take extra care in preventing it, as they would know. Iron chelater Desferal is known to removes importants ions such as calcuim, that in long-term might lead to decreased in bone mineral density.



So what can be do to prevent it from happening:



Have a diet that includes calcuim, vitamin D, bisphonates and several others. Lifestyle change and certain exerise is also the key in preventing and treating it.



That's basically on the topic on osteoporosis, leave me a comment telling me what you think. I will see you later (:

 

SYMPTOMS AND TREATMENT FOR HYPOTHYROIDISM (LOW/LITTLE HORMONES)

Posted by Goh Chun Hui on March 26, 2011 at 10:45 AM Comments comments (0)


Hey guys below is some common symptoms of hypothyroidism. 


  • Fatigue; exhaustion
  • Feeling run down and sluggish
  • Depression
  • Difficulty concentrating 
  • Unexplained or excessive weight gain
  • Dry, coarse and/or itchy skin
  • Dry, coarse and/or thinning hair
  • Feeling cold, especially in the extremities
  • Constipation
  • Muscle Cramps
  • Increased and more frequent periods

Many Thalassemia Major Patients actually have this hypothyroidism problem, the condition might be cause due to your Thalassemia Condition. "Hypothyroidism may also cause mild high blood pressure and raise blood levels of cholesterol" This condition can be treated with thyroid hormone (thyroxine) replacement, which I am taking a 100mg tablet every morning.

 


That's basically it for this blogpost, hopefully that's cover a little on the topic itself, and I will see you later (:

 


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