new member 2years diagnosed with CNS vasculitis - Vasculitis UK

Vasculitis UK

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new member 2years diagnosed with CNS vasculitis

541965 profile image
4 Replies

Hello Health unlocked community. introducing myself here -541965- i'm not just a number but the names kept being rejected and i didn't have all night!

i spoke to David Newman yesterday who spoke to me for 45mins having pulled over in his car to answer the call, a very inspiring man which is why i joined HU, has compelling knowledge and was refreshing and re -energising to listen to him.

I look forward to gaining and sharing experience with you all.

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541965
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4 Replies
zoe69 profile image
zoe69AdministratorVolunteerVasculitis UK

Welcome to the community.

I have GPA vasculitis.

vivdunstan profile image
vivdunstanVolunteer

Welcome!

I have CNS/cerebral vasculitis too, since 1994, though it took until late 1997 to be properly diagnosed, and I didn't start life saving treatment until 1998. Last year I celebrated my silver wedding anniversary and 25th year since falling ill. I preferred the first of those two!

My story is online at

vasculitis.org.uk/living-wi...

Because of my delay in treatment, and then sub optimal treatment because of consultant fertility concerns, my path has been somewhat less than ideal. But I'm still here, doing better at the moment than for a long time, and still happy. Mine is a very MS-like case.

Best wishes.

541965 profile image
541965 in reply to vivdunstan

thanks Viv I read your story last year and was very impressed by your determined spirit

.Stories like these are most inspiring - thankyou. I hope to gain experience and ways to help myself through patient's experience.

many thanks.

michichgo profile image
michichgo in reply to 541965

Wishing you both the best of health. We vaci's take what we can get. Thanks for sharing.

Michele

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