Newly diagnosed and pregnant with twins - looking for other similar cases

[HopeandHappiness]

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!

[GoodDay5150]

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

[Taralv]

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.