I'm possibly maybe the oldest known sufferer in the UK aged nearly 61. I started to raise awareness of it many many years ago as spent so many years with health problems and lack of support. I now watch and listen others so many with same difficulties. I've found across UK and further away so little is still being done to recognise this disease and its long term affects on sufferers. I took my concerns to many groups including Rare diseases uk and Vasculitus UK. Sadly due to lack of funding unable to do that anymore I need someone to take on our website and pick up what I've done with a view to taking it forward. I'm prepared to help but not able to be responsible or much involved as I once was. If you are interested or have relevant skills then please message me. 07805-429670 thanks
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