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Old Sat Jul 7, 2007, 12:31 AM
Sherri Sherri is offline
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Join Date: Mar 2006
Location: Cleveland, Ohio
Posts: 22
My daughter was 5 when she was initially diagnosed (2 years ago yesterday). She has/had both AA and PNH. She sees Dr. Maciejewski and Dr. Plautz at the Clinic. They are up-to-date and I believe truly they helped to save her life! Please feel free to visit her web-site:

www.caringbridge.org/visit/annalysekitzberger

There are VERY few docs - even AA Docs- who have any experience at all w/PNH. If it is even suspected you should see an expert. Of course, that is my opinion. We live in Cleveland so it was a gift to have Dr. Maciejewski 10 minutes away. Although when it came time to consult for a BMT , we drove to Wisconsin to see Dr. Margolis. As much experience as Dr. Maciejewski has- he wanted a second opinion (all Docs felt a BMT was not necessary) as even he has limited experience with children with PNH.
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Sherri

Mom to Annalyse, 6 years old
SAA 8/05 PNH 9/05 ATG 9/05 w/Cyclo
Currently in partial remission
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