Feature: AS... an agonising variety of arthritis few have heard of

Kevin Andrews
Kevin Andrews

A DISABLED man is calling for more to be done to raise awareness of a debilitating condition he and many other people suffer from across the UK.

Kevin Andrews, of Marline Road, St Leonards, has ankylosing spondylitis (AS), an extremely painful form of arthritis.

It causes the joints of the spine to fuse together and affects many other joints in the body.

Sufferers often end up with a curved back, which does not flex at all, known as bamboo spine. Mr Andrews believes there is a great deal of ignorance about the condition among doctors and the public alike, with sufferers often seen as people with a bad back bleeding the benefits system dry.

He said: “It is wrong and ridiculous that people are not being made aware of this nasty disease. People think it is just about a bad back.

“There are more people with AS than those with MS but no one knows much about AS. My aim is to bring awareness to people about this disease and the terrible affects it has on people’s lives.

“It is claimed by many doctors to be a disease that only affects men. This is wrong, as there are about the same amount of women as men in the world living with this.”

Mr Andrews, 57, suffered from bone problems and pain from the age of seven for more than 20 years until he was diagnosed with having AS, which is incurable, in 1984. He said: “When I was a child I was told I just had rheumatism and, in some cases, told it was my imagination.

“Everyone thought I was a hypochondriac. When I was younger I was not in extreme pain but my legs used to ache and I would get a lot of headaches. I could still do things but was always in some sort of pain.

“When I was 13 I started getting chronic pain around my hip area, chest and sternum, which no one could explain. That carried on until I was 20, when I was in constant terrible pain. Again no one knew why and I was told I was imagining it.

“It was not until I had X-rays and blood tests that doctors diagnosed me with AS.

“Over the years I have had to have surgery on my right foot because of excessive bone growth, due to AS. I also had very swollen knees and was in plaster casts for a long time.

“I now have a fully fused spine and severe cervical kyphosis (loss of the neck curve). Fully fused ribs badly affect my breathing and other diseases affect me that are also associated. I have also lost six-and-a-half inches in my height because of my fused spine.”

Mr Andrews, who had to give up his job as a welder when he was 40 because of his condition, has plantar fasciitis, or severe pain in the heels of his feet.

This means it is very painful for him to stand up after sitting for a while.

He also has chronic obstructive pulmonary disease, or shortness of breath and Type 2 diabetes.

Mr Andrews runs his own website at www.asraunited.com which offers a degree of support where around 80 other sufferers highlight their personal stories and experiences of AS.

Debbie Cook, director of the National Ankylosing Spondylitis Society (NASS), said around 200,000 people in the UK suffer from AS.

She said: “One of the real challenges for us as an organisation is that people do not know a lot about this condition. Twice as many people have AS in the UK as those with MS but everyone knows what MS is.

“AS is an invisible disease but people with it are in a lot of pain. It affects the heart, eyes and other parts of the body, not just the spine. It also affects people’s levels of fatigue. A key aim for us is early diagnosis, as we are seeing far too many people waiting literally years to be referred to a rheumatologist.

“If anyone presents to their GP with symptoms such as back pain for more than three months, morning stiffness and improvement in pain with exercise, and they are under 40 they should ask their GP to refer them to a rheumatologist.”

NASS has a new helpline which is 02089489117 and its website is at www.nass.co.uk.