Vasculitis UK stand at the BSR annual Conference 2016

[Suzym2u]

The VUK stand was visited by many doctors and nurses. 😊 We met many old friends and made new friends too. We added many names to the VUK mailing list. Requests were made for booklets and information leaflets too. 

[BooBoo39 Volunteer]

Well Done John , Susan and the team for continuing to spread the word and shed light on Vasculitis . Every new person informed in the medical world makes the pathway much less daunting for every new person diagnosed .

Thank you for all your hard work over the years, it is much appreciated.

[Suzym2u Moderator Vasculitis UK in reply to BooBoo39]

Thank you, I can honestly say John works so hard for everyone diagnosed with Vasculitis on a daily basis ..... 

[Caro12line]

Thank you very much for your hard work, it is very much appreciated. 

[amms43]

Really good that you received good interest. None of the doctors in the practice  where I am know anything at all about vasculitis so I took a Route Map and gave it to the GP who treats me (or not). On a later appointment I asked him if he had found time to read it. He had not and clearly had no intention of doing so. Very disappointing.

[Suzym2u Moderator Vasculitis UK in reply to amms43]

Sadly, there are over 6,000 rare diseases and a GP cannot be expected to know about them all, but that should not stop them showing an interest. Vasculitis is just one and there are 20 different types. A GP will only come across one or two cases of Vasculitis in their whole working career. Some GP's are very supportive but sadly many are not. 

[amms43 in reply to Suzym2u]

Thank you Suzym2u for your response. Interestingly I got an infection in my foot while in France and went to the village GP. When I asked him if he knew anything about vasculitis he said "Of course. I am not an expert but of course I am aware though I have only ever diagnosed two patients with it". He asked if I could obtain my most recent blood tests for him so that he had a bench mark for future visits. Bit different!

[Suzym2u Moderator Vasculitis UK in reply to amms43]

Strangely enough , we go to France every year and have done since John was diagnosed in 2001. We have had on occasion had to see the local village doctor, near where we stay, and he also knew about WG ( GPA ) and he has got to know John well and is very interested in how he is doing from year to year. But we have also visited a local hospital in France and they were not so good on the knowledge of Vasculitis. So I think it is much the same in France, a bit of a post code lottery, sadly. 😔

[amms43 in reply to Suzym2u]

I guess you are probably quite right on that. I have found coming to the meetings, listening to the talks and meeting other patients so helpful and educational. But then I am naturally curious anyway and loved working as a veterinary nurse in my youth so it is interesting to me too.

[AndrewT]

Well done both of you, dare I say, ONCE AGAIN.  You really are 'gems'....What would we all do without you both?

Please pass my very best wishes to John.

Hope that you are enjoying the weather.

AndrewT