Discussion Forums > Thalassemia Major
Daughter with thallassemia major
Alia:
Thank you so much for all your replies.Thank you Andy for your information.i really want to keep an contect with this person you have mention.I really feel for all the people incluoding my daughter who got this condition.
Alia
kabir_love:
HI THERE,
Dont get diappointed my son is 8 months and docotr confirm me also a thal major, anyway like you said ur daughter had gone throung first tranfusion. u must take care of few things that doctors must use fliter while transfusion and there is this medican coming up which will replace the pump use to take out iron excess from the body, well with this medican atelast much of the part in life that cauz pain is out.
rest i m goin throungh a treatment here some researcher had devepold so i hope with that he can stabel the hb of the body so after that even blood transfusion is not necessary. i hope for the best and rest ill keep u inform ..
takecare.
Danielle:
Hello, Alia! :hithere
I'm a Thal Major, and have been receiving blood transfusions since I was 9 months old. I go every two weeks for two units of blood, and my hemoglobin is kept at around 10. I just turned 30 years old. :biggrin
Right now, I am using both Desferal subcutaneously, and the new oral chelator Exjade. It was difficult using the pump when I was a child, because everything seems much worse when you are a child. I didn't understand why I was chosen to have Thal, and became angry at the world. I changed my whole outlook as I got older, and now I just do what I have to do. Sometimes I get a little sad about it, but I just keep moving on, and telling myself that there is nothing I can do. I want to live, and accomplish things in life, so I must do whatever it takes to stay healthy. Things can definitely be worse. I'm grateful that I'm able to walk, hear, see, have all my limbs, and can live a fairly normal life. :)
I totally understand how difficult it is to find a good doctor who knows a lot about Thalassemia. Unfortunately, there aren't an abundance of them. I hope you find a knowledgeable one for your daughter, and that she continues to stay healthy throughout her life. Good luck to you. We are always here when you need us. :hug
lily:
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
Christine Mary:
Hi Lily,
Having thal doesn't classify one as sick? Does it? :dunno
I like to look at it like this:
They just need a bit more "maintanance" and special care,thats all. I think being sick is something one catches.
Thal is a condition and a gene "disorder".
I always read on here that society needs to treat thals as equals. How can we treat them fairly, if we consider them sick? :nurse
Thats the way I see things. Hopefully I will follow this belief when I have to face the triumphs that thal brings.
I dunno,maybe I'm kidding myself? :quiver
Love,
Christine
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