Discussion Forums > Thalassemia Major

my new baby just diagnosed with thal major pls help

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Canadian_Family:
Welcome to the forum.

Most parents worst thought is the iron chelation part rather than the blood transfusion. We were certainly very disturbed when we start reading about desferal and 10-12 hours of needle everyday for the rest of their lives. Our daughter is five now and doing just fine. She takes 375mg of exjade every morning for chelation. We gave her desferal for 40 months before switching to exjade. Exjade is available for patients since last year and is a great convenience, please note desferal is around for almost 40 years and has a proven record of success with thal patients. As a matter of fact, desferal has contributed greatly to the longevity of thal patients.

The truth is that desferal is not scary at all, there is some adjustment time but people do adjust pretty quick and some of our members are doing the pump chelation for 30 years and more. Besides, now oral chelation drugs such as Exjade and L1 are available, which are consumed once a day and that's it.

Chances are that your daughter don't have to go through the desferal pump chelation at all. Please note chelation usually starts after 10 transfusions, exjade oral chelator can be started as young as two years.

Second biggest fear is the mortality of thal patients, which now a days with medical advancement and the management criteria has improved to beyond 40. Infact, patients born today should enjoy good quality of life and not worry about the mortality.

The key to manage thalassemia (in my experience) is knowledge, get as much knowledge as you can and ask plenty of questions and you will see that the fear is gone. Some people still live in the past and may tell you a different story, don't listen to them, those days are over.

Please keep visiting the forum and ask questions.

maryo0m:
Canadian family  :clap thats a very motivating post you are right

Sharmin:
I am so glad that there is more information available these days, even ten years ago when my son was diagnosed adequate information was scarce.  The prognosis presented on the internet was so gloomy...I would spend hours reading on the internet    :o afraid of what I might find on the next page and then feeling depressed about the outdated information that I had read  :wah :wah :wah

Thank god those days are over, I hope that all parents of newly diagnosed thal children will receive updated information so that they have the courage and strength to take care of their families. 

Sharmin

Manal:
Sharmin, unfortunatly there are still some medical sites that still write all these outdated infromation about  thal. I don't know what to say, is this ignorance or indifference or what. Last week i read of of those sites and don't know howcome they are supposed to be ''medical'' that had very negative information to the extent that there was a phrase that said '' it is almost impossible to comply to chelation'' and imagine this site was last updated in July 2007 and written by a doctor.

What annoys me is that almost most of the parents search the internet to know about the disorder once their children are diagnoised because of lack of information and it breaks my heart if they are faced by such irresponsible and ignorant sites as the one i am talking about


Avasmom,  thalassemia is difficult but with knowledge and determination it can be safely managed until one day will come the cure and i believe it will be soon.So have faith :hugfriend

manal

Sharmin:
Avasmom,

Your daughter is so precious :)

Sharmin

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