Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: husna on August 18, 2012, 03:32:36 PM
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Hello, I am not a thal patient but a different quite rare type of anemia hereditary pyropoikilocytosis but NONE of my family is having this disease. I have same problems like low hb level n iron overload. i found this site interesting with many people having same problem as mine.
I am really inspired by all of you that i am not the only one suffering many of you have really serious type of diseases.
Thank you for this site. :smiley
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Hi Husna and welcome,
How often do you need to transfuse? Which chelator do you use? Are you taking folic acid? This is the first time I have read about this condition and I would like to understand more about it.
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Hi Andy thank you for your reply. I need to transfuse 3 to 4 units after every 3 to 4 months but from 1 year the duration is decreased to 2 to 3 months. i am taking exjade and folic acid. Most of the people I met even some doctors never heard of this condition.
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Hi Husna, welcome to Thalpal. And as Andy said, I too never heard about it, would be curious to know. Nonetheless, we all are here to help you and be friends with you. Most welcome. :)
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Thank you Pratik :smiley
Anything you want to know about it you can ask :smiley
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Welcome!
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Thanks ! :smiley
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Hi Husna,
Welcome to Thalpal :welcome2 :welcomewagon
Never heard of this condition and it was happend with us before 20-25 years that even some doctors were unknown about Thalassemia Major and at that time my father let them knew about it.
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Hi Andy thank you for your reply. I need to transfuse 3 to 4 units after every 3 to 4 months but from 1 year the duration is decreased to 2 to 3 months.
In Thalassemia the requirement of blood transfusions increases with age, so i guess that it might be the same condition with you but not sure.
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Hello Dharmesh,
Thank you, yes I agree with you it's really annoying sometimes.