I hope this is ok to post here, but first i’ll introduce myself… my name is Jane, back in 1999 I was diagnosed with a very rare autoimmune disease, Takayasu’s Arteritis, where my immune system attacked my arteries, in my case my aorta. Had surgery and was doing ok for about a year then started declining healthwise… In the last year all specialists involved in my care except the neuro have said that I have MS which is likely to be secondary progressive after 18 years. Symptoms match but a brain scan, without contrast, didn’t pick up lesions on my brain only lesions on my spine. Next week I’m off to have my annual check with my rheumo in Hammersmith/London (for the TAK) and my local rheumo has asked for his advice re neurology up there. So that’s me and that is why what I’m doing is so important to me. It’s taken me 5 years to do a 3 year degree but I’m finally coming to the end and I’m doing my dissertation on invisible disability and the current disability benefits system. What else could I write about?!
So I’m asking if anyone would like to share their experiences for my research. It will obviously be completely anonymised on submission of the form. It would really mean so much to me if I can produce a paper that gives a true reflection of what those of us with an invisible disability have to face, whilst considering an alternative system of support.
Thanks in advance to anyone who can help!
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