Rare Disease Vasculitis Support Group in Northampton wins lottery funding

Northants Vasculitis Support Group is using National Lottery funding to raise awareness of the group to people with this rare autoimmune disease, and their friends and family.

The group meets regularly in Northampton, to share their experiences and support each other on what can be a life-changing disease journey.

There are many different types of vasculitis and it can affect different organs and tissues in the body. The cause is not known but like other better-known autoimmune diseases such as Type 1 diabetes and multiple sclerosis, there is probably a genetic susceptibility.

The good news is that there are treatments, which vary according to the type of vasculitis and its severity, and these can involve steroid medication, other immune-modulating drugs, or regular infusions at hospital.

One of group member’s story is typical. She says “I got ill around 5 years ago, and it started with daily headaches, skin rashes and ulcers, weight loss and overwhelming fatigue. I also spent 3 days in a neurological ward in hospital whilst on holiday in Greece with stroke-like symptoms. Despite seeing various doctors on returning to the UK, it took months to get a diagnosis. I found NVSG and I am eternally grateful for their kindness and for signposting me to a specialist Vasculitis Clinic at Addenbrookes Hospital in Cambridge. I was referred very quickly, and saw a specialist with many years of experience in this rare disease. I am happy to report that my disease is now in remission and I am off medication, although I still attend the clinic for regular check ups and blood tests to make sure that my disease is not flaring up again.”

The last 3 years of COVID have been hard for us, as we are all clinically extremely vulnerable, but we have continued to stay in touch and support each other. Recently, we have started to meet up in person again, and welcome new members. A diagnosis of vasculitis is a lot to take in and overwhelming in many ways. You can contact us by emailing [email protected]. NVSG is affiliated to the national charity Vasculitis UK.