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PNH Paroxysmal nocturnal hemoglobinuria

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  #1  
Old Tue Sep 29, 2015, 08:16 PM
HopeandHappiness HopeandHappiness is offline
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Join Date: Sep 2015
Location: U.S.
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Newly diagnosed and pregnant with twins - looking for other similar cases

Hi everyone,

Just received PNH diagnosis this afternoon and I am 20 weeks pregnant with twins, 28 y.o. Still learning about PNH and processing everything but wanted to know if anyone here has dealt with pregnancy with this disease. Seeing my doctor ASAP but just wanted to throw this out there.

Feeling optimistic and though I have very low platelets (21k) and low rbc count, I am otherwise extremely healthy (currently).

Thank you for any information you can provide!
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Old Wed Sep 30, 2015, 12:23 PM
GoodDay5150 GoodDay5150 is offline
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Join Date: Sep 2014
Location: Centennial, CO
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Hello HopeandHappiness, we are all sorry to hear that you have PNH. As you prob alrdy know, PNH is usually diagnosed in early adulthood and freq in women after becoming pregnant. I began having sympts in my early 30's, but was nvr diag until I was abt 41. PNH can be succ managed during pregnancy, and there are many studies showing this. one example is

http://www.bloodjournal.org/content/...o-checked=true

as far as transplants are concerned, I am a part of this study

https://ash.confex.com/ash/2011/webp...aper44763.html

all of us here are more than happy to assist you in your PNH diagnosis. I was sort of freaked out by mine, but I did my best to remain positive, and so far so good.

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 Thu Feb 4, 2016, 01:00 PM
Taralv Taralv is offline
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Join Date: Dec 2014
Location: Texas
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Hi, I was diagnosed with PNH during my pregnancy in 2014. I also have aplastic anemia. I know this is an older thread, but if you are still checking in, let me know and I will tell you about how things went/are still going, lol.
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