About the North East Lupus Group

The group is run by a regional coordinator who lives with systemic and discoid lupus herself. She joined Lupus UK soon after her diagnosis and found its website useful, in particular the online community where people with lupus ask each other questions or describe how they feel, knowing that readers will be like-minded and supportive.

One of the main problems with lupus, she came to feel, is how little is generally known about it. That can leave a newly diagnosed person lonely in an unfamiliar world of chronic illness, with the added guilt of feeling like a hypochondriac and grief for the old self. She later took on the North East coordinator role because she believes support matters at a local level.

The group meets every three months for a cup of tea and an informal chat. New faces turn up at most meetings, everybody is welcome, and details are posted on the events page.

Jewellery for lupus awareness

To relax, the coordinator has taken up jewellery making. Each piece carries a butterfly, the colour purple or both, the symbols of Lupus UK. There are earrings and bracelets, each slightly different, and necklaces were planned. All donations received for the jewellery go to Lupus UK.

A specialist nurse for the region

The North East is fortunate to have a specialist lupus nurse based at the Freeman Hospital in Newcastle. Patients can ask advice and receive treatment and care there, and the post raises the profile of lupus within the health service. In the eighteen months before this page was written, specialist lupus nurse posts were funded in South East Scotland and in Birmingham, and Lupus UK hoped to fund another nine over the following six years.

The group hopes the Teesside region can benefit and wants a nurse of its own working alongside doctors and patients across the area. It consulted the Rheumatology Department at South Tees Hospitals and received a positive response. A typical post needs about £240,000 over five years, so the plan depends on fundraising.