Helios59 8 years ago
1 reply
Edited by Helios59 8 years ago
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.
