My name is Audrey and I was formally diagnosed with AS in 1989 at the age of 30 when I developed reactive arthropathy in my wrist and knee following a salmonella infection.
I say “formally” because I knew for several years before that I had the condition but hadn’t met a rheumatologist who agreed because I am female. The reason I knew was that I started studying medicine at university in 1978 and graduated in 1983. While at school I suffered a lot of back pain but did not seek medical advice in case it would affect my career plans, and I also recall having an acutely inflamed knee joint when I was about 14. A couple of years or so in to my medical training we were learning the basics of rheumatology and it gradually dawned on me that ankylosing spondylitis was exactly what I was suffering from.
Over the next few years I saw a rheumatologist and an orthopaedic surgeon but no-one would do an HLA-B27 test for me and in those days GPs couldn’t request the test, it had to be a consultant. I didn’t want to appear a hypochondriac so maybe I didn’t push the issue enough in retrospect.
After qualifying I worked in various hospital specialties despite increasing pain and stiffness and became a GP in 1989. I was only in post a few days when I contracted Salmonella food-poisoning from a dodgy Chinese meal and ended up in hospital with suspected osteomyelitis (a bone infection) of my right wrist. I was to be fasted overnight for theatre the following morning to have the supposedly infected area “drilled” but thankfully I woke that morning with a very swollen and stiff right knee which inspired the surgeon to think again. I confessed to him that I had believed for some years that I had AS and that a flare-up of peripheral joints due to food-poisoning would be in keeping with that diagnosis. He was a general surgeon and a lovely man, and at last I was being listened to! An urgent appointment was arranged with a young consultant rheumatologist who confirmed what I’d known for so long and was amazed that it had taken me about 10 years to be diagnosed by anyone other than myself.
I tell my story because I know the medical profession from the inside as well as from a patient’s perspective. I have often been saddened and indeed disgusted by the lack of knowledge many GPs have of the condition. I can speak freely now as I retired on health grounds two years ago. I suspect many have never knowingly seen a case of AS and are under the illusion that it’s a relatively minor condition anyway.
I also tell my story because I believe the hereditary element is not receiving the recognition it merits. I already had a daughter when I was diagnosed and I remember my consultant telling me that I had about a 1 in 4 chance of her being affected. Somehow I didn’t really take on board what a high risk that was and in due course had two sons. Over the past couple of years both my daughter and my younger son have been diagnosed with AS as well, my daughter at 25 and my son at 17. My daughter has two little boys and I’m sure I needn’t elaborate on a grandmother’s worries. Thankfully my elder son has no symptoms at all and doesn’t see any need to have an HLA-B27 test done unless things change.
I’m not saying I wouldn’t have had children if I’d really understood the risk. I could never say that now that I have them, and they don’t blame me for passing this on to them. It’s easy to be wise in retrospect.
The point I wish to make is that AS sufferers should be vigilant about their children. I remember my youngest son having leg pains intermittently in childhood and because of my condition I had my suspicions but a consultant paediatrician diagnosed “growing pains”. Looking back, that was the early stages of my son’s symptoms, and he was just over 16 when the diagnosis became obvious to me and was then confirmed by xray changes and a positive HLA-B27. My advice to any parent is that once you suspect your young person might have the condition, tell your GP so and they ought to investigate. My daughter and son both have lovely GPs but I know they both thought I had lost my marbles until the tests were done. Be as persuasive or indeed demanding as you have to be to get the tests done once symptoms start.
To return briefly to my story, in my last few years as a GP it was the fatigue more than the pain that was making work more and more difficult. I loved my work, words could not express just how much, but getting there every day was becoming more difficult and I was slowly running out of steam. I was afraid of the day coming when I would give less than my best to a patient, and I gradually had to accept that it was time to retire.
That’s not the end of the story though! For many years I’d been dealing in a small way in antiques, so I knew I had something else to do when I retired. Admittedly the pain and tiredness are a challenge even in business, but I opened an antiques shop a year ago along with a business partner who does all the manual work and looks after the shop if I need a few days’ rest. I do all the buying, valuations, shop displays, internet work etc – ie I do all the things I’m able to do and enjoy doing. I was filmed for the Antiques Road Trip and when I saw myself on TV I knew I looked very stiff, but I may be the only one who noticed!
My attitude has been to concentrate on what I can do, rather then break my heart over the things I can’t. I often joke that the body’s a wreck, but I’m in perfect working order from the neck up!
I hope my story may tell others that they’re not alone, may encourage people to persevere to get the right medical treatment, and will encourage people to be watchful about your children without causing them unnecessary worry. If one person benefits, I’m glad I told it.
Northern Ireland United Kingdom