Why we all need to be more aware of ankylosing spondylitis
Bones and Joints If you have four out of five symptoms of ankylosing spondylitis, visit your GP. Early diagnosis can improve the outcome of this painful and incurable form of arthritis.
Ankylosing spondylitis (AS) — a painful and incurable form of inflammatory arthritis that mainly affects the spine but can affect other joints — isn't a well-known condition. Yet people should be aware of it and of its debilitating symptoms, says Dr Dale Webb, CEO of the National Ankylosing Spondylitis Society (NASS). That's because the earlier it is diagnosed, the better the outcomes for patients.
“AS isn't a rare disease,” says Webb. “One in 200 people have it. Unfortunately, there is, on average, an eight-and-a-half year delay from onset of symptoms to diagnosis.”
The effect of ankylosing spondylitis
Ankylosing spondylitis usually develops in the late teens and early twenties. Symptoms can include back pain and/or stiffness, fatigue, impaired vision, bowel function and even psoriasis. For some people, pain and symptoms will be constant, while others will experience 'flare ups'.
Over time, repeated inflammation can lead to a fusion of the vertebrae, which in turn causes more pain, further reduces mobility and creates a forward stoop in posture known as kyphosis.
“AS can affect daily living and, for some people, reduce their ability to drive or even work,” says Webb. “It can be hell to live with. Imagine if you are in your early twenties with your whole life ahead of you, but are suddenly faced with worries about your career, relationships and body image. And because AS causes fatigue, it can stop people going out, which means they can become socially isolated.”
The symptoms to look out for
Unfortunately, because back pain is so common, it can be a difficult condition to diagnose. This means that people who go to their GP with lower back pain are in danger of having their symptoms dismissed. However, if someone has four out of the five following symptoms, they should ask their GP to refer them to a rheumatologist, says Webb.
- First, if your symptoms began before the age of 40
- Second, if the pain started slowly and built up
- Third, if exercising helps alleviate the pain
- Fourth, if there is no improvement when you are resting
- Fifth, if you have pain at night, which improves when you get up and move around.
Increased risk if AS is in your family
“If you have four of these symptoms, don't hesitate: go to your GP,” says Webb. “And be sure to tell them if someone in your family has AS, because this increases your risk.”
The good news is that AS treatment has changed over the last 15 years, and there is now much that can be done to improve the condition. “Initial treatment is with anti-inflammatory medication,” says Webb. “If this is not effective, biologic therapy is available. AS also responds well to physiotherapy, hydrotherapy and exercise, because regular stretching helps with flexibility, movement and posture and can reduce stiffness and pain. The long-term outlook for patients with AS is considerably better than it was 20 years ago.”
NASS are the only charity in the UK dedicated to providing life-changing support to anyone affected by AS.
- We empower people to manage their AS
- We offer specialist physiotherapy volunteer-led sessions around the UK
- We fund research and campaign for improved care
Helpline 0208 741 1515 | www.nass.co.uk