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Old Thu Nov 21, 2013, 02:01 PM
Michael_210 Michael_210 is offline
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Join Date: Nov 2013
Location: San Antonio, Texas
Posts: 7
Any AA patients from the San Antonio area?

Hello there,

Are there any patients with AA, or similar from the San Antonio area? My name is Michael, and I live in San Antonio. I'm trying to meet people with a similar story, who might want to meet up some time and get to know one another. Maybe lunch, or a jog in area. How about facebook?
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Old Thu Nov 21, 2013, 02:28 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 439
There are a few. I'm not sure they read this site. Let me see what I can do. It might take a few days.

In the meantime, plan on attending the Hope Step and a Cure walk in Houston on March 22. That will be a good place to meet people.

You can start a Community of Hope:
http://www.aamds.org/community-news/...s-and-families

The information on the Walk will be up soon.
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Dallas, Texas - Age 76 - 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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Old Thu Nov 21, 2013, 02:43 PM
Michael_210 Michael_210 is offline
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Location: San Antonio, Texas
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Thanks triumphe64! Yes, I'm planning to make the trip to Houston!
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Old Thu Nov 21, 2013, 05:13 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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There is also a peer support network at AAMDS.

http://www.aamds.org/support-and-community/peer-support
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Dallas, Texas - Age 76 - 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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Old Sat Nov 23, 2013, 12:30 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 254
Hi we live in Houston but my husband just had a transplant for AA and PNH last month.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #6  
Old Sat Nov 23, 2013, 02:02 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
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Quote:
Originally Posted by Heather8773 View Post
Hi we live in Houston but my husband just had a transplant for AA and PNH last month.
The details of the Houston event should be posted soon. We know all the details but there still some computer links to get ready.

It will be at the University of Houston as part of the Frontier Fiesta.
__________________
Dallas, Texas - Age 76 - 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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