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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Thu Nov 2, 2017, 01:38 PM
GoodDay5150 GoodDay5150 is offline
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Nord Pnh Conference In Irvine

So is anyone here attending the meeting in Irvine next week? Just wondering... Not very many PNH patients out there......

Just wondering

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Tue Nov 28, 2017, 11:38 PM
Sarah W Sarah W is offline
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Midwest

Hope to get to one of these someday. Too far away for me. I was just diagnosed today by my new hematologist. My hematologist 4 years ago never tested for PNH sadly, but it was also in a midwest county with only 120,000, so I doubt he'd ever had a PNH patient. I joined the forum back in 2013 when I had my first, very general bone marrow biopsy done, but I never posted because the cancer tests were normal and I didn't meet the criteria for AA or MDS. I had never heard of PNH till this month. My hematologist back in 2013 decided it was probably just my mild autoimmune medicine I was taking that was giving me pancytopenia. (About 1 in 1000 do get a little bit of low platelets on the drug, but not like I have, and not full pancytopenia.) Thankfully I now live in a large metro area with 3 million people. Glad to know why I've been so sick. I got much sicker than before over the summer.

Just had my second bone marrow biopsy last week. My hematologist will have them look there for PNH cells but I already have a PNH-positive blood test back. This disease is so rare though that I don't have any one with experience or expertise to talk to about it yet except my doctor. He used to live and work in NYC, but even he has only ever treated 3 other people besides me.

Thus I'd love to get to a conference sometime.
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Old Wed Nov 29, 2017, 11:52 AM
Neil Cuadra Neil Cuadra is offline
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Sarah,

NORD hasn't yet announced their 2018 PNH Patient Meeting schedule. Chances are one of them will be in your part of the country.

The Aplastic Anemia & MDS International Foundation (AAMDSIF) will have a free Patient Conference in Indianapolis on Saturday, May 19, 2018. There are likely to be at least a few PNH patients in attendance. Registration isn't yet open.

Even if meetings sponsored by NORD, AAMDSIF, and the Aplastic Anemia & Myelodysplasia Association of Canada aren't in the midwest, they are only a plane ride away.
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Old Tue Dec 5, 2017, 07:10 PM
GoodDay5150 GoodDay5150 is offline
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Hi Sarah. It is true that many dr's have little or no experience w/ PNH. I would advise, (and so would anyone else familiar w/ PNH) to make sure that you meet w/ a PNH expert as soon as possible. I was never misdiagnosed or diagnosed in an untimely manner.... I simply ignored my symptoms until they became debilitating. They were actually pretty severe for a long time. This site is an excellent resource, and everyone here who I have communicated w/ has been helpful. The NORD website and the PNH meetings are a great resource to meet other people w/ this very rare disease.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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Old Tue Dec 5, 2017, 11:28 PM
Sarah W Sarah W is offline
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Thanks GoodDay5150!

My hematologist has treated 3 other PNH patients before in the past, back when he lived in NYC and worked at Columbia. He appears to be in his mid 40's. Do you think 3 PNH patients make him enough of an expert? My metro area has 2 million people. The closest metro area significantly bigger than mine would require driving 10 or so hours away one way. Not going to happen.

Is there a list of PNH experts/doctors somewhere? I'd love to see who is in my part of the U.S.
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Old Wed Dec 6, 2017, 03:35 PM
GoodDay5150 GoodDay5150 is offline
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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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