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PNH Paroxysmal nocturnal hemoglobinuria

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Old Tue Aug 30, 2016, 02:34 PM
GoodDay5150 GoodDay5150 is offline
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Has Anyone Attended Any Nord Pnh Meetings In 2016?

So has anyone on this forum attended any NORD PNH meetings in 2016. I have been to a few of them, and I may attend the Seattle meeting next month. I have no idea if anyone that has attended any meeting that I have been to frequents this site. I was just wondering. The link is here.

http://rarediseases.org/pnh_2016/

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 Sat Sep 3, 2016, 05:11 PM
JenW JenW is offline
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I would love to attend a meeting, I wish there was one closer to home 😕
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Old Tue Sep 6, 2016, 03:57 PM
GoodDay5150 GoodDay5150 is offline
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Hi Jen. There used to be more meetings held by NORD, but I think that they now do fewer meetings targeted at more specific regions of the country. So far I have been the only person at the meetings I attended that has had a transplant. Not all doctors see a transplant as a good option unless your symptoms are very severe. One young guy in L.A.; who also had AA, was going to have a transplant. So has that option been discussed w/ your doctor? Younger is better in such instances because your body can recover more easily from everything that is involved. I was 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 Mon Sep 12, 2016, 09:02 PM
JenW JenW is offline
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My oncologist /hemotologist said that the bone marrow transplant will be last resort in my case. I am doing the soliris infusions every other week now and my numbers are slowly but surely coming up. My last hemoglobin count was 10.5. Which is the highest it has been since before I was diagnosed.
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Old Tue Sep 13, 2016, 03:29 PM
GoodDay5150 GoodDay5150 is offline
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Hi Jen. Some of the dr's that practice at the clinic that I go to helped to develop the protocol used for me, so maybe that's why they were all so confident in my treatment. How crazy is it to have something like PNH? Some guy from Nebraska who I met at a conference said that only 1 other person in that whole state is known to have PNH! I'm hoping that the doctor who is speaking at the Seattle conference will have some stories of other transplant ppl, or better yet some transplanted patient(s) since the Fred Hutchinson Cancer Research Center is there.

Mario
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