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I have an adult friend with this. She was diagnosed when she was younger and quite ill. She had a tough time getting a diagnosis because it's so rare. But now she has her routine injections and is fine. I remember her discussing it briefly. I'll ask her for details if it will help?!
Everyone is right, Carmen is beautiful!
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Jennie
Baby boy born 3/16/06 
Home 10/19/06
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