Incurable NOT teminal

  • Posts: 1
    Edited by: Helios59 - 18/08/2016 20:48

    Hello everyone , My name is Carol and I have autoimmune disease ! I have had it for approximately 6 years although the doctors think longer. What is autoimmune disease? well its full name is Eosinophilic Granulomatosis and Polyangitis (EGPA ) or Churg Strauss after the doctors that's found the illness in 1951.

    Churg Strauss Syndrome is an autoimmune vasculitis. Autoimmune means your immune system malfunctions and attacks your body. Vasculitis means that blood vessels are involved, and Churg Strauss causes inflammation of small to medium size blood vessels.

    So although I don't have cancer of any type I do have an illness that will eventually kill me, why am I on this site ? I'm here because there are no charities/specialist nurses that help Vasculitis sufferers. I'm trying to make people aware I am (apparently) 1 in 100.000 sufferers, in the county I live, there are only 3 sufferers of which I am one.

    I am treated with chemotherapy and steroids plus other medicines to counter act the side effects, once the chemo comes to an end I have to go on an immunosuppressant for an undecided time , depends on how I react to the treatment.  I'm not unique as there are lots of people that have had or have it in fact Harold Ramis died of the illness.

    I know that Marie Curie usually cares for terminally ill people, I'm not terminally ill but I am "incurable", I have an illness regardless.

    Thank you for your time and thank you for reading.

    Carol.

  • Posts: 135
    26/08/2016  09:00

    Hi Carol


    I am sorry to read about your illness and appreciate that you may find it particularly isolating when you have a rare disease such as yours.You dont say what kind of help you are looking for, and although we may not be able to answer your questions here, I may be able to signpost you in the correct direction to find the answers you are looking for. So please feel free to contact us directly if you'd like to: tel 0800 090 2309. In the meantme,  Arthritis Care have a Support Line and may be able to provide you with information and support.


    Best Wishes


    Brigette


    Marie Curie Support Line

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