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#1
Thu Mar 8, 2012, 11:40 PM
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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 
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#2
Thu Mar 8, 2012, 11:51 PM
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This website is a good place to start. Be sure to call and talk to the Patient Educator.
http://www.aamds.org/
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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#3
Fri Mar 9, 2012, 04:23 AM
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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.
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#4
Mon Nov 5, 2012, 01:47 AM
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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
__________________
AA/PNH Dx 1998, Warfarin, Soliris
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