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.