It has been 30 years since I was diagnosed with ankylosing spondylitis in 1991. Prior to diagnosis I went through ten awful years that those living with axial spondyloarthritis will be familiar with: painful days and more painful, sleepless nights; a search for answers (pre-Internet) while being bounced around between doctors, chiropractors and physiotherapists; an inability to understand what was happening to me other than to think it must be all in my head; depression and inertia; bad days and some good days when I would overdo things;

years of sleeping sitting upright because to lie down was impossible. At time I couldn’t walk, carry a basket of laundry or pick up my small daughters. At work, I managed somehow but because of the fatigue, presenteeism was an issue.

 I eventually told my chiropractor that nothing he was doing helped me. He went in a back room and returned with a large medical book opened to a page on which there was a heading ‘Ankylosing Spondylitis’ and said “I think you have this.” I had never heard of it, but the description fitted me.

My chiropractor wrote a letter to my GP, who (finally!) referred me to a rheumatologist. X-rays, blood work and a physical exam confirmed the diagnosis. But knowing nothing about the disease, the diagnosis gave me no comfort.

Fortunately, I contacted The Arthritis Society. One of the Society’s physiotherapists put me in touch with the Ontario Spondylitis Association. I was keen to learn as much as I could. I joined the Association and soon became its Fundraising chair and later its President. I found volunteering in a supportive organization was a therapy in itself because I met and talked to others with my disease, learnt more about it (knowing about your disease leads to better outcomes) and helped to create awareness of it. 

When I was approached in 2005 to help start up a national patient organizaton I did not hesitate. I was willing to do anything to help prevent even one person go through the ten years of pain and distress that I did before diagnosis.

After coming together with others to found a national organization, the Canadian Spondylitis Association, I ran it on a volunteer basis for eleven years. I learnt a lot more about spondyloarthritis in general and axial spondyloarthritis in particular. But the key to my volunteering was awareness. It is so important to create awareness in the general public, particularly in the 15-35 years old group, and among health care providers so that axial spondyloarthritis becomes better known and no-one has to go through a ten or more years delay to diagnosis.

Globally, the mean age at symptom onset is 26. Axial spondyloarthritis is a life long disease with no known cure as yet. For those who have a life time living with the disease to look forward to, do not despair. Axial Spondyloarthritis can be managed well. At 74 I can say that life is better in every way than it was when I was in my 30s and 40s before diagnosis.  

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