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Raising Awareness of Ankylosing Spondylitis: Naomi’s Story
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Naomi Ban has been working out in gyms since she was 12, so the Quebec resident never thought much about aches and pains — let alone the possibility of having a chronic health condition — until receiving a diagnosis of ankylosing spondylitis last year at age 36. Ankylosing spondylitis, or AS, is a type of arthritis that affects the spine, sometimes causing vertebrae to fuse together and making it hard to move. But instead of letting the news derail her, Ban committed herself to staying active and helping to raise ankylosing spondylitis awareness, including how to be active with condition.
As a trainer and the owner of a personal training business, Ban took her first AS symptom — back pain — in stride. “My ankylosing spondylitis decided to manifest itself while I was taking a break from tae kwon do training. The sharp pain in my back felt like a knife twisting inside,” she says. That pain dragged on for three months. “I began to think maybe I had unknowingly injured it during training, so I didn’t see the urgency in consulting a doctor.”
Why Ankylosing Spondylitis Awareness Is Increasing
Not only do people sometimes dismiss back pain and other ankylosing spondylitis symptoms, but doctors sometimes misdiagnose them as well, says Robert Inman, MD, a spondylitis expert and a researcher at Toronto Western Hospital in Toronto, Ontario. This trend might be reversing as doctors and the general public learns more about AS.
“Ankylosing spondylitis was out of the limelight, but now it’s got a high profile in terms of patient organizations and the medical community because it’s a treatable condition,” Dr. Inman says. The introduction of biologic medications has given doctors a way to alleviate pain and improve quality of life in people with moderate to severe AS.
Being Diagnosed With Ankylosing Spondylitis
Before Ban saw a doctor, her ankylosing spondylitis symptoms steadily worsened. “My toes started to swell, and I lost sensation on the sides of my foot. My knuckles turned blue, and I couldn’t bend some fingers. I began using a cane to help me walk. I ended up at the hospital when I could no longer lift my arm,” she says.
The diagnostic process, including weeks of testing, dragged on until Ban found out she was positive for HLA-B27, the gene that is strongly correlated with AS. But for her, the worst news was that her doctor wanted her to tone down her training regimen. “I was devastated when the doctor told me I could no longer train at a high intensity and couldn’t lift heavy weights. I felt like my life was over,” she says.
But people with ankylosing spondylitis can and should be active. The National Institute of Arthritis and Musculoskeletal and Skin Diseases recommends strength training and range-of-motion exercises in addition to activities that are easier on the spine and joints, such as swimming. Yoga may be helpful as well. But for Ban, who’s been training and competing for most of her life, this was hard news.
“I studied kinesiology in college and made a career helping people move. I had found my passion in life at such a young age, and now had a disease that was threatening to take it all away from me,” she says. She viewed ankylosing spondylitis as “my biggest and hardest competitor to this day,” adding, “This was a fight I didn’t want to lose.”
A Personal Quest to Raise Awareness of Ankylosing Spondylitis
Instead of sinking into despair, Ban rose up the challenge, using her training and experience to attack a new goal: raising awareness of ankylosing spondylitis. She researches, writes about, and promotes ways to stay physically active with AS through her Facebook page, “”, her accompanying , and her involvement in the Toronto-based .
Ban tried many of the strategies she discovered through her writing and research and got good results. “My strength increased tremendously and the pain dissipated,” she says. Ban trained herself to squat 205 pounds after barely being able to lift any weight at all.
Ban says she chooses to take a positive problem-solving approach to the challenge of ankylosing spondylitis, a condition she hadn’t heard of before she was diagnosed. Although there’s a history of rheumatoid arthritis in her family, Ban says she had no reason to consider a genetic risk for arthritis herself.
But in her view, genes aren’t fate — and people with AS can still choose the way they respond to the condition. “I find that many forums and discussion groups focus on the negativity of ankylosing spondylitis instead of looking at ways to increase quality of life,” she says.
With her writing, Ban hopes to provide an alternative voice and to be a positive role model. “My articles help people with AS start moving again through a variety of activities and sports.” The key, she says, is to find ways to continue to do the activities you enjoy, even with ankylosing spondylitis.
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