THALASSEMIA N ME

Subtitle

About Me

 

Welcome To THALASSEMIA N ME Website.

 

This website was formed to share everything on Thalassemia to my personal life.

 

The main objective of building this website is to let everyone know more about Thalassemia condition and spreading the awareness. 

 

 

PERSONAL INFORMATION

FULL NAME : GOH CHUN HUI ( WU CHUNHUI

FULL NAME IN CHINESE : 吴春晖

NICK NAME : CHUN HUI

WORK NAME: JACK

AGE : 28

SEX : MALE

RACE : CHINESE

DATE OF BIRTH : 29 DECEMBER 1987

NATIONALITY : SINGAPORE

HOME TOWN: SENG KANG ( NORTH-EAST OF SINGAPORE )

HEIGHT : 169 CM

WEIGHT : 56 KG

BMI : 19.7

OCCUPATION: ADMINISTRATOR

HOBBY: WATCHING MOVIES, LISTENING TO MUSIC,

                 UPDATE THIS WEBSITE AND MORE...

SPOKEN LANGUAGE: ENGLISH, MANDARIN & HOKKIEN

CONTACT E-MAIL : [email protected]

OFFICIAL WEBSITE : http://www.thalassemianme.org/

WEBSITE : http://www.thalassemianme.com 

 

CONDITION : FROM BIRTH TO 7 YEARS OLD

                    ( THALASSEMIA INTERMEDIA )

                    FROM 7 YEARS OLD ONWARDS

                    ( CLASSIFIED AS BETA THALASSEMIA MAJOR ) 

 

COMMITMENT: THALASSAEMIA SOCIETY (SINGAPORE) COMMITTEE MEMBER

 

MORE ABOUT ME : I AM A FRIENDLY PERSON THAT WOULD LIKE MORE NEW FRIENDS, I AM TRYING TO ME NICE TO EVERYONE, HOPE TO MAKE MORE FRIENDS HERE SPECIALLY THESE WHO HAS THE SAME CONDITION AS ME.

 

THALASSEMIA N ME WEBSITE DESCRIPTION : PERSONAL WEBSITE OF A THALASSEMIA MAJOR SUFFERER FROM THIS INHERITED BLOOD DISEASE, DETERMINED TO LIVE A BETTER QUALITY OF LIFE.

 

ADDONS : BASICALLY BEFORE 7 YEARS OLD MY BODY STILL ABLE TO MAINTAIN A CERTAIN HB LEVEL, SO THE DOCTOR DECIDE NOT TO START TRANSFUSION FIRST, BECAUSE ONCE YOU STARTED YOU WILL CONSTANTLY NEED REGULAR BLOOD TRANSFUSION, SO UNTIL ONE DAY I HAD SYMPTOMS THAT I MAY NEED TO BEGIN MY FIRST BLOOD TRANSFUSION, FROM THERE ONWARD I NEED TO HAVE REGULAR BLOOD TRANSFUSION AND ALSO KNOWN AS THALASSEMIA MAJOR

 

THALASSEMIA/HAEMOTOLOGY CONSULTATION DOCTOR : IVY NG, TAN EE SHIEN AND CURRENTLY ANG AI LEEN

 

TREATMENT RECEIVED: BLOOD TRANSFUSION EVERY 3-4 WEEKS - 3 UNITS WASHED REB BLOOD

 

CHELATERS TREATMENT: DESFERAL INFUSION IN MY EARLY DAYS (10-15 YEARS OLD), THEN FOLLOW BY DESFERAL INFUSION WITH L1 FERRIRPONE 3 TABLET A DAY COMBINATION THERAPY (16-19 YEARS OLD) AND LATELY JUST COMPLETELY ON L1 FERRIRPONE 7-8 TABLET A DAY.   (AFTER 19 YEARS OLD) CURRENTLY STARTING ON EXJADE (DEFERASIROX) IRON ORAL CHELATER FROM 1000MG TO 1500MG A DAY (AFTER 24 YO)

 

SCREENING/SCANNING: MRI SAFETY SCREENING ONCE EVERY YEAR, HEART SCREENING - ECG/ENCO AS WHEN NEEDED. (MIGHT BE 1-2 YEAR ONCE)

 

BLOOD TEST: FULL BLOOD COUNT,  FERRITIN ( RIA ), FREE THYROXINE ( FT4 ) AND FREE T4/TSH (THESE ARE THE CONSTANTLY FROM 6 MONTHS - A YEAR TIME)

 

SUPPLEMENTS: VITAMIN B, VITAMIN C, VITAMIN D AND FOLIC ACID.   

(USED TO TAKE CAICIUM WITH VITAMIN D TABLET BUT I NOW PERFER JUST DRINKING MILK)

 

MEDICATIONS: THYROXINE 100MG TABLET A DAY, DIGOXIN 62.5MCG 2 TABLET/DAY

 

DISCONTINUE MEDICATIONS: DIGOXIN TABLET 62.5MCG 2 TABLET/DAY

 

COMPLETE LIST OF WHAT I HAVE BEEN THROUGH AS A THALASSEMIA VISIT THAL MEDICAL CARE SECTION

 

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  • finencial support

    I have one douther .she was a thalassemia patient. but i have no abilite her proper treatment . please help me .
  • WORLD THALASSEMIA DAY 2011

    HOPE EVERYONE WHO ARE HEALTHY AND ARE ABLE TO DONATE BLOOD TO GIVE A HAND TO HELP THALASSEMIA PATIENTS BY DONATING BLOOD TO SAVE A LIVE.

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