Are you a UK vasculitis patient using the NHS....? - interesting webcast

[Kimbangu]

Hi I may have mentioned the Lauren Currie Twilight foundation before , I am not connected with them in any way... But they are doing some good work here in the UK promoting general awareness of vasculitis.

They have recently published a webcast on their site which is extremely interesting. It takes the form of a question and answer session on Vasculitis and presentations by;

Dr. David Jayne , head of Vasculitis and Lupus @ Addenbrooks
Dr. Paul Brogan, senior lecturer in Vasculitis @ Great Ormond Street
Dr Marcus Martinez Del Pero, ENT registrar

The Lauren Currie Twilight Foundation

The webcast lasts approximately 1 hour and they do ask for your email address first time you access it. It contains a bewildering variety of British regional accents therefore may be hard to understand ( even by myself, at one point!) . There are some nice slides which go along with the presentations.

[pberggren1]

I wish it had closed captioning so I could understand it.

[Kimbangu]

I wish it had closed captioning so I could understand it.

Yeah that did occur to me! Divided by a common language, I think they call it..... Anyway, this forum does have a percentage of UK users, and I'm sure we are all comfortable with that...

[pwc51]

I listened to it live on the day - it was excellent, if a bit scary. It would be good to know what the audience size was and how many were patients and how many were doctors. I cannot support its cause of raising awareness strongly enough. I think I was lucky in that my disease flared up quickly and my doctor jumped out of the cycle of trying to fix an apparent sinus issue before too much damage was done. Sadly, this is generally not always the case.

[Hal]

This is a good presentation. Thank you for bringing it to our attention... cheers!

[pberggren1]

I agree with you Dale. It would be nice to know how many patients logged on to watch it.

[Kimbangu]

I agree with you Dale. It would be nice to know how many patients logged on to watch it.

I signed up for their newsletters and I'm sure they will let us know via the newsletter. They are really "on the ball" . I do like the way this particular organisation are using the whole umbrella of vasculitis in order to promote awareness of the subject. One of the graphs in that presentation was a little scary, though.

The Lauren Currie WG case is a shocking one to us here in Scotland but when one considers the whole world there are such similar cases so very often, it's heartbreaking when the subject is young. Increased awareness among "first contact " general practitioners could really make a huge difference to the prognosis.