It was our village carnival and wakes today, so we had a stall on the main street with lots of other people selling, crafts, books, toys etc plus cakes and teas etc. We thought we would try to raise some awareness and fundraise a bit too Anyway, a guy called at our stand, he was from Yorkshire, diagnosed with Cutaneous Vasculitis 7 years ago. Never met anyone else with vasculitis before... he was a bit gobsmacked... and we talked to a nurse, who had never heard or come across Vasculitis before, so she took some info and booklets with her. I have no idea how much I raised will have to count it when I have put my feet up for an hour. It was fun, we both enjoyed doing it very much.
Susan and John
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Amazing that a NURSE had never heard of Vasculitis! Makes you wonder what they are taught, doesn't it? Probably spend, all their time, dealing with sore feet, sprained wrists and constipation!
Sadly, Andrew there are a lot of nurses out there who have not come across some types of Vasculitis, I am afraid this is what happens with a rare disease. A GP may only come across one or two cases in their whole working career. Vasculitis is just one of 6000 rare diseases it would be impossible for a GP to know them all.
We know a few nurses who have been diagnosed with Vasculitis, one a cancer nurse, but had not come across Vasculitis before they were diagnosed themselves. It was a big shock to them.
Another nurse, diagnosed with Vasculitis ,had a terrible problem with explaining what it was to her own ward manager, the ward manager could not understand why the nurse was off sick so much and had no understanding of Vasculitis at all. I supported this nurse through a tribunal, sadly. But this nurse soon educated all the members of the tribunal panel about Vasculitis, with all the info I sent her
will definitely get in touch - one of those lovely banners would be useful! Glad you had fun and spread the word a little - I am leaving posters around each hospital I visit.... just an idea could we have the collapsible cardboard boxes so that we can put our spare coins in - all adds up - !
collapsible boxes we have looked at but they are so expensive, we do have hard collection boxes, which can be used over and over again, and we also sell metal pin badges for £1 each.
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Anyway, a guy called at our stand, he was from Yorkshire, diagnosed with Cutaneous Vasculitis 7 years ago. Never met anyone else with vasculitis before... he was a bit gobsmacked... and we talked to a nurse, who had never heard or come across Vasculitis before, so she took some info and booklets with her. I have no idea how much I raised will have to count it when I have put my feet up for an hour. It was fun, we both enjoyed doing it very much. 
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