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Old Wed Dec 6, 2017, 02:35 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
Posts: 150
Hi Sarah. I live in Denver and when I was diagnosed by the HMO I had at the time found that I had PNH, I was immediately referred to a specialty clinic. For privacy reasons, doctors aren't really supp. to tell you abt other patients, but I have asked about other PNH patients since I have been going there, which is abt 6.5 years. I know that my doctor has treated 4 PNH patients herself in that time. There are numerous doctors at this clinic, and I know that some other patients w/ PNH both pre and post transplant have been treated there. Actually, a few dr's at my clinic helped develop the protocol that was used for my transplant. I will put a link to a study that I am a part of. (PUB 2047) PNH treatment has changed a lot since the development of SOLIRIS, which was approved in 2007. Here are some links that you will find helpful. NORD or someone from ALEXION can advise you of a PNH expert near you, and they can possibly assist you in the event that you need to travel somewhere to meet w/ a doctor. PNH patients are few and far between, but there are great resources to assist in your/ (our) treatment.

Mario

https://www.aamds.org/sites/default/...2011ASHPNH.pdf

https://rarediseases.org/rare-diseas...emoglobinuria/

http://www.alexion.com/patients
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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