June - The Oxfordshire Vasculitis Group

Vasculitis is inflammation of the blood vessels. Any of the body’s organs may be involved and symptoms are often non-specific. As Vasculitis is a rare disease it can be difficult to diagnose. Early diagnosis is important to get treatment started, and to reduce permanent damage. There is no cure for many of the vasculitis diseases so the aim of treatment is to keep the disease process in remission. The severity of the illness can vary greatly from very mild, where no specific therapy is required, to severe life threatening multi-system diseases which need specialist hospital care.

The national charity does not give financial aid to local groups so as Gloucestershire is part of the Oxfordshire group this is where our money will go.

This is what Sue Ashdown tells us:

“I set up the Oxfordshire Vasculitis Support Group in 2005, after having had Granulomatosis Polyangitis since 1995. I felt there was a lack of support locally for people with Vasculitis. As Vasculitis is a rare set of diseases people can feel isolated when diagnosed, so to speak to someone with the same condition can feel very reassuring.

The aim of OVSG is to offer support to people in Oxfordshire and surrounding counties. We are an independent group who offer an e-mail link for information and for signposting people to other sources of support and information.

We link in with the Vasculitis UK group and so have access to literature and other resources.
We hold informal lunches 2-3 times a year, which give people, their families and carers a chance to meet us and pick our brains. These events are also an opportunity for them to meet people in a similar situation, taking similar medications and having been along the same path.

Our lunches are cheerful occasions and we aim to show people that you can have a Vasculitis and survive, and life can get back to normal.

Once a year we organise a more formal meeting: one or two doctors who have specialist knowledge of Vasculitis give a presentation, and it is a chance for people to ask questions and learn about their illness. There is also time to meet with others over lunch.

We are volunteers, and any money we raise at present is used for mailing and stationary needs.
We have to charge people for attending the seminar for the lunch. Even though the hotel is generous and doesn't charge us for use of the room, we have to pay for use of projector and screen. We do subsidise this if we have any spare money in our account as people may have financial restraints and we don't want this to bar them from coming.”

Mary Michael