‘My Backstory’: Even with a Strong Family History of Ankylosing Spondylitis, Roz Was Misdiagnosed for Decades

My Backstory is part of a new campaign about ankylosing spondylitis (AS) awareness from the nonprofit patient community CreakyJoints. The videos in this campaign were produced with support from Novartis Pharmaceuticals Corporation.

To find out if your chronic back pain could be AS and to watch more videos, visit creakyjoints.org/backpain .

Various joint pain and chronic pain has plagued Roz Tolliver for most of her adult life. “The pain started once I joined the military. I hyper-extended my knee so it bent back. For most people if that happens, it might hurt for a few minutes … Well, I’ve had pain in that knee ever since.” Name a body part and she’s probably had pain there: back, neck, elbows, feet.

“I started to wonder if maybe I was just overly sensitive to pain,” says Roz. “Maybe the problem was with me.” Family members started to perceive her as a hypochondriac, which led Roz to shut down and stop discussing her problems.

This led to depression, which in turn affected her ability to get her pain properly diagnosed. If doctors see that you have depression, they assume that’s the hidden reason for your pain, she says. “You’re in pain because you’re depressed, not the other way around.”

Roz was misdiagnosed with various diseases for almost 30 years: spinal stenosis, osteoarthritis, and facet joint disease, to name a few. When she later got a diagnosis of fibromyalgia, she was relieved, even though she didn’t think the symptoms of fibromyalgia necessarily fit with what she had.

(Roz’s AS journey helped inform the plot of our new back pain web series, My Back Is Killing Me. And she and other AS patients star in it, too! Watch episode 1 here.)

What’s more, Roz had a strong family history of ankylosing spondylitis (AS), a type of inflammatory arthritis that primarily strikes the lower back and pelvis. Both her father and one of her brothers had the disease.

“When my brother died, it scared me to death,” Roz says. “I told my doctors that my father had this disease. So they tested me for the gene that’s strongly associated with AS, which is HLA-B27. And I was negative. Because HLA-B27 is not commonly found in African Americans; it’s maybe only 50 percent of the time, I believe that there are many African Americans who are undiagnosed.”

Being a woman likely also contributed to her delay in getting diagnosed. “AS is thought of as a man’s disease. I had the double whammy of not just being a woman but being a black woman, so [doctors] were not looking at me having AS.” Roz’s Message for Fellow Ankylosing Spondylitis Patients

Roz regrets not getting diagnosed sooner, but feels grateful that even starting treatment for AS in her fifties is helping her start to feel better. She wants to encourage others to push the medical community to get the right diagnosis.

“The more I learn about [ankylosing spondylitis] the more I want to help others to get that diagnosis because I know how wonderful that is,” says Roz. “I know what it’s like to kind of suffer in silence for years. Once you get the diagnosis, it’s like you can find a home for yourself.” Keep Watching

Could your chronic back pain possibly be ankylosing spondylitis too? Learn more at creakyjoints.org/backpain .

For more stories about people living with ankylosing spondylitis, watch Jed’s Backstory and Hannah’s Backstory .

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