I Have Pnh

Personal Stories, Advice, and Support 6 People

    Actually...it's My Daughter Who Has Pnh.

    My daughter is 17 years old now. Right after her 15th birthday, she developed a severe headache and vomiting. I took her to an Urgent Care, they gave her pain med and med for vomiting. Nothing helped. When they got her labs back, they told me I would need to go to the ER. We went...
    nursedk1 nursedk1
    1 Response Oct 18, 2011

    PROBABLY the Only One Here

    I was diagnosed with PNH in 1996 .I have been on steroids every day since then .Now on a new drug SOLIRIS at a cost of $20,000.00 a month. They call it an orphan Drug. How did I get PNH? In some cases people can identify how they might have acquired PNH. Exposure to some...
    bquick bquick
    51-55, M
    5 Responses Feb 28, 2008

    I Do Not Have Pnh, But I’m Starting A Charity For It...

    My name is Aubrey Sapero and I’ve recently been taking on the challenge of creating a charity for both PNH and Chiari Malformations. Two conditions that have drasticly changed the lives of two people very close to me. I would LOVE to have someone tell me their story and allow...
    ArtsiMom ArtsiMom
    22-25, F
    Nov 11, 2011

    I Have Pnh Too!

    I first became sick in 1991 and was misdiagnosed for over a year.  I received chemotherapy, steroids, and a splenectomy before being properly diagnosed with Aplastic Anemia.  Shortly after the AA diagnosis I was referred to a clinical trial at NIH where I received ATG...
    Lelania Lelania
    36-40, F
    4 Responses Apr 16, 2010
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