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

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Offline husna

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Hello all.... I am happy to find this site
« on: August 18, 2012, 03:32:36 PM »
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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Offline Andy Battaglia

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Re: Hello all.... I am happy to find this site
« Reply #1 on: August 18, 2012, 04:29:51 PM »
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.
Andy

All we are saying is give thals a chance.

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Offline husna

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Re: Hello all.... I am happy to find this site
« Reply #2 on: August 18, 2012, 06:10:31 PM »
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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Offline Pratik

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Re: Hello all.... I am happy to find this site
« Reply #3 on: August 18, 2012, 06:19:45 PM »
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. :)
Every child is special.

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Offline husna

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Re: Hello all.... I am happy to find this site
« Reply #4 on: August 18, 2012, 06:30:06 PM »
Thank you Pratik  :smiley
 Anything you want to know about it you can ask  :smiley

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Offline Bobby

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Re: Re: Hello all.... I am happy to find this site
« Reply #5 on: August 19, 2012, 04:27:14 AM »
Welcome!

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Offline husna

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Re: Hello all.... I am happy to find this site
« Reply #6 on: August 19, 2012, 11:39:01 AM »
Thanks !  :smiley

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Offline Dharmesh

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Re: Hello all.... I am happy to find this site
« Reply #7 on: August 20, 2012, 08:30:59 AM »
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.
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Hello all.... I am happy to find this site
« Reply #8 on: August 20, 2012, 08:39:23 AM »
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.
Start listening your body, it always gives signs

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Offline husna

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Re: Hello all.... I am happy to find this site
« Reply #9 on: August 20, 2012, 03:36:07 PM »
Hello Dharmesh,
Thank you, yes I agree with you it's really annoying sometimes.

 

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