Hi, just read your post. I haven't logged in for some months due to health reasons and been busy. I'm very interested in anyone with hsp

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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  • I thought hsp was a short term disease and only lasted a while. I have purpura, although my GP does not know what it is. The skin does split which can be painful otherwise it just looks awful.

  • I am 63 and was diagnosed with HSP around 1976/7, had a kidney transplant in 1981 and then 30 years of very good health. Three years ago things started to go down hill, now they say I have WG. Perhaps it was that in the first place as they have better tests now.

  • Dear Wendy,

    Have you contacted Susan, or John, Mills regarding this? I only ask as they are the 'brains' behind us all-I'm sure that they won't mind me describing them thus, especially since it is true. There are quite a few people, although I can't give you exact numbers-sorry-who have hsp/granulosis/kidney disease. I have had a kidney transplant myself-though for slightly different reasons. I do have ANC vasculitis, several different sorts apparently, but, at least as far as I know, not hsp. Sorry to 'rain on your parade', a little, as it were. I've just turns fifty-three so not, too far, behind you Wendy.

    Kind regards in any event.

    AndrewT

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