I Have Cryofibrinogenemia

A Cryofibrinogenemia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Cryofibrinogenemia. You're not alone. 8 People

    I Have Cryofibrinogenemia Also

    its agony - woke up this morning after exposure to little cold air, window opened, my skin is agony - stinging and so painful - just my ankles and lower legs so trying everything and now back in bed for the heat!!!   hard to copy with - any tips appreciated.....  although I am...
    pams111 pams111
    36-40
    Jun 17, 2012

    Recently Diagnosed With Cryofibrinogenaemia

    I have been diagnosed with cryofibrinogenaemia after an operation to remove a damaged kidney. The histology report from my kidney says I have it but I have none of the symptoms. I am awaiting the results of the many blood tests they took from me. Could I have been missdiagnosed...
    vixmag vixmag
    31-35, F
    Sep 28, 2013

    Newly Diagnosed, Still Looking For Answers.

    I was misdiagnosed. My doctor thought for sure that I had cold urticaria, but I have cryofibrinogenemia. I'm still in the early stages and still getting answers. I am a stay at home mother to three beautiful girls and I'm also an army wife. I'm hoping to connect with other people...
    Megg27 Megg27
    26-30
    1 Response Aug 15, 2011

    Me Too - Long Term

    I have cryofibrigeneomia. I was diagnosed in 1999. I have been on prednisone since that time. I have gotton the dose down to 5 mg. I have tried to get below that but I have been unable to do so. I believe I have a number of side effects from the long term use. Which is...
    DLH1 DLH1
    61-65
    1 Response Aug 29, 2012
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