A WOMAN hit by a debilitating condition found new strength in helping others struck down by it.
October is Lupus Awareness Month, but, for Val Wilson, of Staining, secretary of the North West Lupus Group, every day is lupus awareness day. Not just for herself but those she helps.
She says the auto-immune condition cost her voluntary work, her teaching career and ultimately her identity, her sense of self and self worth redefined by a condition often invisible on the outside.
That changed four years ago when Val became a “missionary for lupus” and now she has been able to resume her voluntary work at the talking newspaper.
She said: “The support group covers Lancashire, Cheshire, Greater Manchester and Cumbria. As secretary, I have helped people, on the telephone or by e-mail, come to terms with their lupus. We run support groups to enable patients to meet and chat and, in many cases, develop firm supportive friendships.
“I feel lucky my condition was diagnosed early, but that was only because I took a magazine article about lupus to my doctor and he agreed the points mentioned matched my problem.
“Although I do have limitations, I’ve learnt through the Expert Patient Programme to pace myself and some days I feel I have moved a mountain!”
Val suffers from Systemic Lupus Erythematosus.
“It’s an auto-immune condition where the body’s defence mechanism turns in on itself and starts destroying healthy body tissue, as well as infections. This can cause inflammation anywhere. It is treatable but incurable at present. Another form called Discoid Lupus mainly affects the skin. When diagnosis takes a long time there can be organ damage and scar tissue the patient is unaware of.
“Lupus is multi-symptomatic. Every patient has a different story.”
Musician Seal is said to suffer from discoid lupus. Last year Lady Gaga (inset, below) claimed to have tested positive for lupus associated antibodies.
In the past 12 years, since her condition was diagnosed, Val says she has met many who want to share their experiences with newly diagnosed sufferers “to make their journey less stressful”.
She added: “The European League against Rheumatism surveyed 2,000 people with lupus and found, within one year of diagnosis, 25 per cent had to apply for sick leave, and 28 per cent for social or disability allowance.
“It’s not just explaining lupus to your friends, try explaining it to the bureaucracy that decides whether you need help or not. Over the last four years, I have learned to cope with the limitations.”