Discussion Forums > Thalassemia Major

AP Biology Student Looking for Insight

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faitdavid:
Hello, my name is David, I am a 16 year old student in North Carolina. I recently developed an interest in thalassemia when I found out about my family history of the condition. I was blessed with not receiving it, but my baby cousin was not so lucky. In my AP Biology class, we have learned about genetic disorders, and now we are doing a project on this. I saw this as the perfect opportunity to learn more about thalassemia, spread awareness, and help out. I want to know... What is an average day like? What do thal patients want to be able to do easier?

Manal:
Hi faltdavid and welcome to the site :biggrin

I think that being comfortable with chelators is best thing thals want to be easier in terms of administration, side effects and price too.

And we definitely hope for a cure one day
Feel free to discuss whatever you want

Manal

faitdavid:
Thanks Manal!

I need to do some background research on chelation. I know it's removing excess iron in the blood, in this case, as a result of frequent transfusions, but I don't know much about how. I know that since it's iron, the chelator is deferoxamine, but how does the process work? And you said that it was uncomfortable, if you don't mind my asking, how is it?

Thanks,
faitdavid

Zaini:
Hi David,

:welcomewagon on the forum,

For me it would be awesome if my daughter would not need transfusions,i know the most part of thalassemia major is receiving transfusions but i dream about one day when there would be something to keep her hb at levels that can help her grow without getting transfusions,if that makes any sense  :huh .

Chelators can be uncomfortable in many aspects,like if you talk about desferal,who wants a needle in their tummy the whole night,and it also effects bone growth in growing children,and with Defriprone/Ferriprox/L1 there is always a fear of neutropenia and so many of our members have complained of joint pains while taking Defriprone.With Asunra,you have to keep an eye on kidney and liver functions or it can hurt em.So yeah for me eliminating the source of extra iron i.e transfusions would be good.

Good luck with your project :)

Zaini.

Cari:
Hi david, I'm sure you will get more info from more experienced parents and patients on this site but I can tell you that we have a 20 month old boy whos daily life so far is pretty normal. He began transfusions at 3 months old when his body transitioned from producing fetal hemoglobln to adult hemoglobin. This happens to all children around 3 to 9 months of age if I'm not mistaken. The only difference is that these children are not able to produce the adult hemoglobin on their own. My son was monitored after the first transfusion to determine how long he would need between transfusions and after a few months it was something that was done every 3 to 4 weeks. He is a normal child full if mischief and although he doesn't enjoy the monthly visits he doesn't seen to be effected by his condition yet. It gets tougher when he gets sick because the intervals between weeks are cut shorter.

We have not started chelation however, doctors recommend that these patients start the process when his ferretin hits 1500. I believe they will start him on exjade. You can refer to the topics under this site under iron chelation corner. You will actually find a good amount of articles and info on the different types.

 

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