"Step on a crack, break your mother’s back” isn’t one of them (or true)."
Ankylosing spondylitis (AS) is an inflammatory arthritis of the spine. As an autoimmune disease, it is chronic (lifelong) and there’s no cure. However, patients can manage the condition to reduce symptoms and the impact on quality of life. There are some myths about ankylosing spondylitis. These myths may delay people from learning their diagnosis or getting treatment.
“Myths about AS are harmful because it prevents patients who may have symptoms of the disease from seeking care because they don't fit the typical mold of what an ‘ankylosing spondylitis patient’ looks like,” says Nilasha Ghosh, MD, a rheumatologist at Hospital for Special Surgery.
What are myths about ankylosing spondylitis?
MYTH #1: AS only affects white men
The reality is that AS can affect people of any gender, race, or ethnicity.
It had been widely accepted that AS was five to six times more common in men than in women. However, recent studies have shown this ratio to be incorrect. Today, researchers are now finding that female patients may have more atypical and/or somewhat milder symptoms. As a result, women may be more likely to be misdiagnosed or undiagnosed.
Doctors don’t know exactly what causes AS. There seems to be some genetic and environmental factors for many AS patients. For example, many people with AS carry a gene called human leukocyte antigen (HLA)-B27. Research has found a link between this gene and a strong immune defense system that may wrongly attack healthy tissue while fighting an infection like influenza, Epstein-Barr virus, or Herpes Simplex virus.
“I would much rather a patient come and see me and be evaluated for AS and for me to tell them that they don't have it, rather than a patient who has it and is silently suffering but doesn't believe that they have it because they don't fit the mold of these myths,” added Dr. Ghosh.
This myth highlights the lack of diversity in previous studies of the disease. In the future, more research may need to be done with a more diverse participant pool to get a better picture of who is at risk for AS.
MYTH #2: AS only affects the spine
In fact, AS inflammation can affect multiple joints and organs, including the:
- Digestive tract
AS may cause these parts of the body to have inflammation and swelling. When this occurs, it could lead to blurry vision, fatigue, fragile bones, heart problems, difficulty breathing, and digestive issues. Learn how exercise can address and improve many of these additional symptoms.
MYTH #3: AS always leads to spinal fusion
Sticking to your treatment regimen — a combination of medications, lifestyle changes, and physical therapy — can help manage AS and keep it from progressing to spinal fusion.
“While [this myth] may have been true in the past without treatment, we know a lot more now and are able to catch it early to prevent that,” says Dr. Ghosh.
It’s important to remember that AS is not usually life-threatening. It’s also true that many people are able to manage their condition and preserve their quality of life. With the use of biologics or NSAIDs, and in some cases, surgery, many patients are able to keep up the activities they love.
Dr. Ghosh is a rheumatologist at the Hospital for Special Surgery in New York City.
- Yu, D., et al. (2020). Clinical manifestations of axial spondyloarthritis (ankylosing spondylitis and nonradiographic axial spondyloarthritis) in adults. UptoDate.
- U.S. National Library of Medicine. (2016) Ankylosing Spondylitis.
- Hickman, R. (2013) The Myth That Women Don’t Get Ankylosing Spondylitis. Autoimmune Association.
- Yu, D., et al. (2020). Patient education: Axial spondyloarthritis, including ankylosing spondylitis (Beyond the Basics). UptoDate.