HI ALIA,
I FEEL ALOT LIKE DANIELLE, I HAVE AN 18YR OLD SON WITH THAL MAJOR. HE HAS HAD MANY COMPLICATIONS THRUOUGHT HIS YOUNG LIFE, HOWEVER IM EXTREMELY GRATEFUL THAT HE IS ABLE TO WALK, TALK, HEAR, RUN DO MOSTLY EVERYTHING OTHER KIDS HIS AGE ARE ABLE TO DO.
HAVING A SICK CHILD IS NOT EASY BY ANY MEANS, AS A PARENT YOU FIND YOURSELF BLAMING YOURSELF AND ASKING WHY HIM AND NOT YOU, THESE ARE ALL NORMAL THINGS THAT AS PARENTS WE ALL GO THRU.
WHEN MY SON WAS BORN THERE WAS VERY LITTLE TO KNOW ABOUT THALLASEMIA, NOT VERY COMMON PLUS NO INTERNET TO LOOK UP INFORMATION. ALL THAT HAS CHANGED THERE ARE MANY ADVANCES IN THAL FROM THE RELEASE OF EXJAD WHICH ALL OF US THAT HAVE BEEN DEALING WITH THAL FOR MANY YEARS KNOW JUST WHAT A BLESSING EXJADE IS FOR OUR THAL PATIENTS. BONE MARROW TRANSPLANTS ON OUR PATIENTS ARE NOW MUCH MORE SUCCSESFULL. WITH ALL OF THESE NEW ADVANCES YOUR CHILD IS SURE TO HAVE AN ALMOST NORMAL LIFE.
THIS FORUM HAS A LOT OF INFORMATION AND GREAT ADVICE FROM PATIENTS ASWELL AS FROM US PARENTS. WE HAVE ALL BEEN THRU MANY CHALLENGES AND ARE HERE TO HELP ONE ANOTHER.
FIND A GOOD HEMATOLOGIST THAT YOU CAN TRUST AND FEEL COMFORTABLE WITH AND ASK QUESTIONS AND IF YOU DONT UNDERSTAND WHAT THEYRE SAYING ASK AGAIN, SOME DOCTORS HAVE A TENDENCY TO TALK AT PATIENTS NOT TO THEM, AS A PARENT IT IS YOUR RESPONSABILITY TO STAY ON TOP OF THINGS AND QUESTION YOUR DOCTORS, DONT FEEL INTEMIDATED, YOU TELL THEM IF YOU DONT UNDERSTAND SOMETHING AND MAKE THEM EXPLAIN IT TO YOU. IT TOOK ME A LONG TIME WHEN MY CHILD WAS YOUNG TO SPEAK UP AND ASK QUESTIONS WITHOUT FEELING LIKE I WAS DUMB OR SOMETHING. DOCTORS ARE PEOPLE WITH KNOWLEDGE AND IT IS THEIR RESPONSIBILITY TO EXPLAIN THINGS TO US IN A WAY THAT WE CAN UNDERSTAND SO THAT WE CAN TAKE BETTER CARE OF OUR SICK CHILDREN.
WELCOME TO THIS WONDERFUL SITE, TAKE CARE
AND GOODLUCK.
LILY