Thread: Just diagnosed
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Old Mon Apr 28, 2014, 01:17 AM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
Shana,

I'm sorry you've gotten this double diagnosis, especially at your age. There's no good age for a life-threatening illness, but it seems even less fair for young adults who are typically just starting out on their own and are usually quite healthy.

How did you learn that you had SAA and PNH? After a routine checkup?

You're doing exactly the right thing by learning about the diseases and asking questions. Ask your doctor, ask your hospital, ask other patients here, ask the Aplastic Anemia & MDS International Foundation, and ask the PNH Research and Support Foundation and the PNH Support Group.

Soliris has proven to be a very successful drug for many PNH patients. Let's hope it is for you too, so a transplant won't feel so imminent.

Fertility is something you have to keep in mind from the start. Make sure every doctor you work with knows about your fertility concerns, especially when the topic of transplants is discussed. There are ways to preserve fertility but you have to work with a specialist before your reproductive system is put in danger.
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