MD's in norhtern CA
 

Hi there,

A friend of mine recommended this website the other day. I was diagnosed with PNH 3 years ago. My blood results say that I'm at 45% PNH, but my marrow isn't showing very many PNH cells. I also have aplastic anemia and it seems that my energy levels are really effected by low platelets, RBC's and Hemoglobin...not necessarily the spread of the disease. I'm just hoping to find someone out there who has been dealing with this condition as well, and maybe even someone who can recommend a good Dr. in my area. Thank you! Its comforting to know that there are others out there :)

Bree

This website is a good place to start. Be sure to call and talk to the Patient Educator.

http://www.aamds.org/

Bree,

I think that Steven Coutré and Jason Gotlib at Stanford have PNH experience. It might be worth a phone call to Stanford University Medical Center to inquire about it.

PNH Specialists + many other patients
 

Hi, you can find many fellow PNH patients over at the PNH support group, more info too, www.pnhdisease.org

The first doctor may be further but she's very good with PNH. Also she has a very promising PNH drug trial going.

Dr Illene Weitz, U of Southern California, LA
http://www.ohsu.edu/xd/health/servic...rs/meyersg.cfm

Dr Gabrielle Meyers, Oregon Health & Science:
http://www.ohsu.edu/xd/health/servic...rs/meyersg.cfm

Susan