Hello all.... I am happy to find this site

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. 

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.

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.

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.

Thank you Pratik 
 Anything you want to know about it you can ask 

Welcome!

Thanks ! 

Hi Husna,
Welcome to Thalpal
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.

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.

Hello Dharmesh,
Thank you, yes I agree with you it's really annoying sometimes.