Cinderella disease that starts with back pain
A full house is expected at an information day at the Norfolk and Norwich University Hospital on Saturday 21 April to raise awareness of a painful inflammatory disease known as ankylosing spondylitis (AS) or axial SpA.
Heading the speakers will be rheumatology consultant Dr Karl Gaffney, a leading expert in the treatment of AS which he describes as a Cinderella disease because the diagnosis is so often missed.
Around six per cent of adults have chronic back pain and one in 20 of those will have AS, he says. Alarm bells should ring if there is pain and stiffness which improves with activity and deteriorates with rest.
The problem is that it often starts with chronic lower back pain which can be due to many other causes. An accurate diagnosis requires a specific blood test and an MRI scan but many patients go for years before they are properly diagnosed studies show that the average is eight and a half years, he says.
Its estimated that as many as 200,000 people in the UK have AS, including the former Norwich City goalkeeper Bryan Gunn who was diagnosed when he was 28.
It usually begins in early adult life and may lead to increasing pain and stiffness caused by progressively ankylosed (fused) joints. Fifty per cent of AS patients also experience inflammation and damage to other parts of the body including the eyes (iritis), bowels (colitis), skin (psoriasis) and hips.
The good news is that there are effective treatments available and exercise helps one of my patients,Tony Button (see Notes to Editors), spent six months in a plaster cast after he was wrongly diagnosed with a slipped disk 50 years ago, says Dr Gaffney, who was the first doctor in the UK to treat AS patients with revolutionary new drugs known as biologics.
The main symptoms to look out for are chronic back pain ie pain lasting more than three months which is worse in the morning and improves with exercise. I would urge anyone who has these symptoms to see their GP.
The information day is being organised for patients in partnership with the National Ankylosing Spondylitis Society (NASS), a charity which runs a helpline and offers hydrotherapy and physiotherapy for people affected by AS, as well as raising funds for research into the disease.
Dr Gaffney is a trustee and medical advisor for the charity.
For more information about AS go to www.nass.co.uk