There is a Vasculitis UK Facebook support group where you can talk to others , some members do have CSS. But you have to remember you are very rare, around 1000 diagnosed here in the U.K. There is a list of local support groups on the VUK website where you can talk to others who are diagnosed with vasculitis. vasculitis.org.uk/about/fin...
If you would like to share your story you can write to John , John.mills@vasculitis.org.uk . John has vasculitis but a slightly different type to yourself.
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