Daily Mail 23rd Oct

[Nadine99]

Long report in the Daily Mail today about a young lady who died from Wegener's. Good publicity for vasculitis but shame VUK is not mentioned, they seem to have started their own charity which although understandable, seems a waste of resources when the growing knowledge base already exists.

[Nadine99]

Just seen the blog on the other page - sorry, I'm not used to 'blogging'

[John_Mills Volunteer in reply to Nadine99]

As far as we are aware Nadine, they are trying to raise awareness of Wegeners Granulomatosis and are funding a 3 year research project at Aberdeen University Hospital. The old Stuart Strange Vasculitis Support Group supported a 3 year research project for Birmingham Hospital from 2006 -2009. The details are in a previous Vasculitis UK newsletter.

Since John took over as chairman of Vasculitis UK in April 2009, Vasculitis UK has been working so hard to get improved recognition, better diagnosis and better treatment. The Vasculitis Route Map was one significant step in this process. The new website another.

On Thursday John, as Chairman of Vasculitis UK and as a patient representative with WG (GPA) will be at a meeting in London of the Working Group of the British Society of Rheumatologists which is reviewing, revising and updating the guide lines for treatment of Adult ANCA Associated Vasculitis.

Vasculitis UK has also been working with Dr Paul Brogan, who is the UK’s leading expert on Paediatric Vasculitis to make the paediatric guidelines more readily available for clinicians throughout the UK. John, as Chairman of Vasculitis UK is also a member of the influential Vasculitis Rare Disease Working Group. This group is working to find better systems for diagnosis, better systems for assessing disease activity and of course better treatments.

Vasculitis UK is also giving financial and practical support to the new Vasculitis Registry, which is a data base which will record information about all the people who are diagnosed with Vasculitis in the UK, the treatment they receive and how they progress. This will be an invaluable tool for those doing research in Vasculitis and will eventually lead to a better understanding of what causes Vasculitis , how best to diagnose it and how to treat it most affectively both in the short and the long term.

The past two years have seen great advances in diagnosis and treatment of Vasculitis, unfortunately, these advances have come too late for Lauren and too many others we know of

[hamble99b Volunteer]

don't apologise nadine, you have a valid point and I agree.

sandra.

[John_Mills Volunteer]

I have been asked this morning if the LCTF give financial assistance to individuals with Vasculitis. I have looked at their website and apparently they do plus donate wheelchairs and alarm systems. This is something Vasculitis UK don't do but we do support people with ATOS Assessments, appeals and applying for DLA and ESA. Also fundraising events to help people raise money for themselves or for wheelchairs. I am afraid we don't donate money to individuals because much of our income comes from people who are struggling to cope with the effects of Vasculitis themselves and in some cases could be worse off than the person who receives the financial help.

Susan

[Derek]

Hi Susan, sorry for my ignorance but I'm not familiar with many abbreviations used. Can you advise what LCTF means. It's probably an age thing and unless I use the abbreviated terms often they get forgotten. May I suggest a list of abbreviations at the back of the next updated Vasculitis Route Map. Although they may be explained in appropriate text it's much easier for me to initially check a list to see if it's relevant in my case.

Derek.

[Nadine99]

This one is for the Laurie Curran Trust Fund that was the story for the Daily Mail article about a young girl dying from Vasculitis. See the Vasculitis blog.