Ok, so we have a little more information now. The ‘vasculitis’ that I have relapsed with is actually a generic term for a group of rare inflammatory autoimmune disorders; affecting approx 1 in 30, 000 people in Australia. The particular kind of vasculitis that I have has finally been identified as Churg-Strauss Syndrome. This is something that medico’s didn’t know when I had my first episode 15 years ago. Churg-Strauss Syndrome is very rare; affecting approx. 1 in 500, 000 people in Australia. Not exactly the type of lottery I had hoped to win! So there’s probably only about 10 or 12 of us in the country with this illness. The prognosis isn’t brilliant, I must say, and I’m not really responding to treatment at the moment; however doctors are hopeful that things will begin to improve by mid-next week. It is suspected that this illness started developing in my early-mid teens. This diagnosis explains an awful lot about all the rest of my health issues and it is little wonder that I have struggled with them for so long - so perhaps there is some silver lining after all in being able to narrow things down. I’m having medical attention every day and documenting the visible symptoms as best we can, although the vast majority of the symptoms are not visible to the eye and are only evident in very specialised pathology tests. Thanks once again for your support. And you were right, Vicky Oehm, it IS like an episode of ‘House’!
Posted on: Fri, 16 Aug 2013 00:41:16 +0000
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