PNH (Paroxysmal Nocturnal Hemoglobinuria)

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  • Please take a few minutes to tell us about yourself and your personal story. Simply click on  "Reply to Discussion"  t o get started. ------------------------------ MarrowCommunity Support Team ------------------------------

  • Two PNH Drug Trials Going Well:Update Go to Apellis's Clinical Trials and see the two PNH trials status reports so far. One is PHAROAH, the other is PADDOCK. http://www.apellis.com/clinical-trials.html Here are the summaries: APL-2 Monotherapy ...

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    RE: Tired

    Tired Hi Jen, How are you?! How did your Dr appt go? Many people with PNH are or were on Social Security disability. Some went on company disability first. Later some were able to return to work once on Soliris but not all of them. I used to go to AAMDS ...

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    RE: Tired

    Hi Susan and all. Yes, my transplant was done at PSL in Denver. As I have prob stated in some previous posts, there was not a lot of discussion between myself and dr's b4 my treatment plan. I was told that I needed a transplant and that's what we did. ...

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    RE: Tired

    Yay! You go girl!


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