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Hello!

I have an uncle and two cousins (his sons) with this condition. My uncle's condition wasn't discovered until he was in his late 50s, and a lot of damage had been done to his body. His four children were immediately tested, so my cousins began treatement in their 20s. They are doing quite well, and lead completely normal lives other than "donating" blood on a regular basis.

I hope things go smoothly for you.

Terri
 

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I read the link that Maia posted and now I know what this is.

Hopefully now that you know what your dealing with you can get some help.

Good luck and let us know how you get along.:wink2:
 
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