My name is Stephen Dent and am 64 years old living in Cheshire in the north west of England. I first started to realise that there was something odd going on when I was about twelve when I got dreadful pains in my hips, usually after exercise as I was a keen cyclist and cross country runner. My parents took me to the Doctors and of course it was “growing pains”. These growing pains have continued for over 50 years now so I must be about 20 feet tall by now!
As I progressed through my teens I started to get sharp stabbing pains in my back in the middle of the night. At first, I thought there was a broken spring sticking out of the mattress into my back but of course that was not the case. When I was 18 someone ran into the back of my Mini car and really jerked my head back. I never went to hospital but shortly afterwards started to get severe pains in my neck as well as my lower back. I think I went to the Doctors several times but it was dismissed every time as some sort of strain injury. Generally the pain was in the night and I struggled to get off the bed in the morning. I could never figure out why the pain eased off during the day.
The pain was at its peak when I was 22 which was the tender age I got married for the first time. On my wedding night I was in absolute agony so we got up at 4 am, packed up the car and drove off on our honeymoon to Scotland and by nightfall had reached Glencoe. We bed and breakfasted all round Scotland and Skye and must have stayed at about 6 different guest houses. I was surprised that the night pains seemed to vary depending on the softness of the bed – the softest being the best.
A year later, I got severe pains in my eyes. I could not entertain even a speck of light so hid under the bedclothes for two days until I could get an appointment with the GP. The doctor sent me straight to the Manchester Royal Eye Hospital who saved my sight in the worst eye with steroid injections. They also did blood tests and sent me for x-rays and low and behold, an eye hospital diagnosed me with ankylosing spondylitis and referred me to a rheumatologist.
Two weeks as an inpatient at Salford’s Hope Hospital with intensive exercise 3 times a day made an amazing difference to my posture, pain and general wellbeing. I have continued with exercise classes ever since. Drugs in the early days were steroids which made my weight balloon by 5 stones and then phenylbutazone, an early NSAID which is now banned in the US.
I was one of the early members of the National Ankylosing Spondylitis Society in the UK in the 1970s and still run their Crewe, Cheshire branch. How am I now? Well my biggest problem is my neck which has severe cervical spondylosis rendering me liable to paralysis if I get any neck trauma. My AS is nowhere near as bad as 40 years ago in the night but during the day, I struggle to do some everyday things like putting socks on or digging the garden.
AS has not stopped my having a great 48 year career in local government. I have been a Justice of the Peace, Chaired a Big Folk Festival for many years, am Vice Chairman of the Middlewich Clean Team litter picking organisation and do many other voluntary jobs. A few years ago I was made Cheshire’s most Valuable Volunteer.
My advice to young people with AS is to keep active in your mind and body and exercise, exercise, exercise. The future is what you make it.
Middlewich in the county of Cheshire in England