"My Churg Strauss Story" ( EGPA ) Looking fo... - Vasculitis UK

Vasculitis UK

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"My Churg Strauss Story" ( EGPA ) Looking for personal stories.

Suzym2u profile image
Suzym2uModeratorVasculitis UK
5 Replies

We, at Vasculitis UK, would like to collect some personal stories about people's experience living with Churg Strauss ( EGPA).

If you would like to share your story please send a summary version ( A4 size ) to John Mills. John.mills@vasculitis.org.uk

We are looking for stories both positive and negative.

Thank you

Susan

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Suzym2u
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5 Replies
Katie18 profile image
Katie18

I'll send you on if you like. What do yoy need them for? - it will help focus my mind

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toKatie18

Thank you No rush, maybe one or two weeks , is that ok?

Katie18 profile image
Katie18 in reply toSuzym2u

Fine will do

Alanfern profile image
Alanfern

I have CSS/ Vasculitis I'm looking for some support and too talk with people in similar situation

Suzym2u profile image
Suzym2uModeratorVasculitis UK in reply toAlanfern

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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