Just as NASS lines up a Cardiff event on 28th October for newly diagnosed AS sufferers, Paul Evans celebrates never missing a session at Cardiff NASS group’s weekly exercise meeting for TWENTY years! Continue reading Ankylosing Spondylitis can’t stop Cardiff’s Paul Evans →

I think we are supposed to be high-fiving but we look more like a weird chorus line. Every Wednesday evening for more than a decade I’ve been in either the pool or the gym at University Hospital of Wales in Cardiff along with a dedicated band of exercisers. What unites us is a particular type of arthritic condition called Ankylosing Spondylitis. Without exercise we’d all seize up and our posture would resemble the curve of a palm tree.

On World Arthritis Day I’d like to say a big thank you to all of my fellow sufferers in the Cardiff group of the National Ankylosing Spondylitis Society. When I joined the group I could just about walk. I will always remember how, during my first session, one of them had to pull me to my feet from the floor where we were doing exercises. He was so understanding. I realised I was with people who knew what I was going through and it was the example of their cheerfulness as much as their practical advice that helped me to improve. Without the group I wouldn’t have known about various resources and possibilities.

As the years have gone by, we’ve shared symptoms, set-backs and progress. And tragedy. One of the group died needlessly because of a chain of circumstances and lack of understanding of the condition. Basically, in someone who is badly afflicted, the spine can fuse into a single ‘stem’, hence the palm tree analogy. Movement between the vertebrae is extremely limited. Our poor friend was roughly handled by public servants who should have known better and he died of a broken back. His case contributed to a raising of awareness of the condition but was too heavy a price to pay.

Another group member died this summer, Chris Thorkelson. He lived in my street and I admired his indomitable courage as, despite progressive challenges, he tried ever new ways of getting around and doing his bit.

We have fun in our weekly exercise sessions which are led by a rota of dedicated physiotherapists and now and then we fund raise for the charity, the National Ankylosing Spondylitis Society. Our sponsored walks are never the fastest race around the park but they’re very good humoured!

Thanks also to the Rheumatology Department at UHW and to the specialist AS physios there who keep us moving. It’s the NHS at its best. We are patients who will seldom be ‘cured’ but we respond very well to ‘management training’.   At least AS is a condition in which one can influence the impact of the symptoms by appropriate regular exercise and understanding of potential treatments.

It can be a frightening condition. One of the possible facets is iritis, inflammation of the iris, which is excruciatingly painful and can cause blindness if not treated promptly; also psoriatric symptoms and intense fatigue.

For these reasons also the camaraderie of a NASS group such as ours is enormously helpful.