Discussion Forums > Thalassemia Major

Unaware!

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SIL:
Hi everyone! My brother-in-law(bil) has Thalassemia and has to go in for regular transfusions. His HB is barely 8 and it drops to as low as 4.5-6. We, his family are pained to see him suffer so. He is only 24 yrs old and is cheated out of a "normal" life. He hardly ever goes out and has few friends who are all working abroad.
He is almost always working in their family owned laboratory, where he helps out. Even the doctors in our city are not very aware of Thalassemia and everytime he falls sick, we are at a loss as to what his treatment should be. We dont even know what his diet should be! I learnt about iron chelation only on this site. What kind of medicine should he take?
He has undergone a spleenectomy in the hopes that his hb levels will not fall, but to no avail!
He normally refuses to take medicines and only takes folic acid tabs irregularly. It seems to me as though he is counting his days.
I'm soooooo glad I found this site. Glad and elated to see so many wonderful people fighting it out and willing to share their experiences and hopes. I adore u all for it! :hugfriend
What are we to do?  :huh

jade:
HI SIL

Welcome aboard.  You will find valuable information here.  Do you mean your brother in law gets regular transfusion but does not get chelated?
If this is so then you should have him go for a complete blood test, more specifically ferritin and start chelating accordingly.

Where are you from?  The doctors have never deemed it necessary to have him chelate?

You should read the different posts where you will find a wealth of information.

I believe first and foremost you should have him go for the ferritin test and if the values are too high(which I believe will be very high if he was regularly transfused and had never been chelated)  start  chelating immediately.

After that you can look at the supplements to be provided.
Take care
Jade

nice friend:
Hi SIL
 :welcome2

Umair

Lyanne:


  Hi! Welcome!!!!!!!  :welcome I believe you have come to the right place! I really hope learn more about thalassemia here......
As Jade said chelation is very important, your brother in law should discuss this with his hematologist.Having the disorder doesn't mean we can't have normal life, we just have to be strong and brave in facing it, to handle it really well. Compliance is important, along with patience, one could suceed in making his/ her life "normal". But yes many doctors are still unaware with this disorder and mistakenly as just plain and simple anemia and prescribes the very poison to our condition which is Iron, and that makes it worst.I do hope you keep us updated. :hugfriend

Sharmin:
Dear Sil,

Welcome to the board.  You are doing a great thing getting information for your brother in law.  I have a few questions for you which may will make it easier for us to guide you.

Has your brother in law been transfusing all of his life?  Does he have antibodies which cause his hemoglobin to remain so low?  Ideally he should receive enough blood so that his hemoglobin is above 90, 4 weeks after a transfusion.  At each transfusion he should be getting 14 - 16 cc of blood for every kg of his body weight.  Also if you can tell us what country you live in we can recommend a thalassemia center for your brother in law.

There are several chelators available.  Desferal, exjade and L1 - are any of these available where you are?  Please keep posting and we will do our best to guide you. 

Welcome to our board and wishing you the best,

Sharmin

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