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.
Unlike many people with ankylosing spondylitis (AS) who go years (like Hannah) or decades (like Roz), Jed was diagnosed with AS — a type of inflammatory arthritis that primarily strikes the lower back and pelvis — pretty promptly.
But back then, treatment options were limited and Jed tried to ignore his symptoms by playing sports and staying active.
In fact, Jed basically forgot he had AS until his college years, when his AS symptoms finally caught up with him.
(Jed’s AS journey helped inform the plot of our new back pain web series, My Back Is Killing Me. And he and other AS patients star in it, too! Watch episode 1 here.)
“I was always hunched over, I had a bad back, my back was always hurting. I was always tired and needed to leave the party early,” he recalls. “We joked that on my 22nd birthday that it was actually my 57thbirthday. [His college friends] started calling me old man.”
Jed’s AS symptoms took a scary turn when his back and neck pain got so bad, it became difficult to drive safely. “Before I sought treatment, I could not turn my head to the left at all,” he says, “which made driving dangerous because I could not check my blind spots and I was getting scared.”
Jed began treating his AS with a type of medication called biologics, which affect the immune system to reduce inflammation, relieve symptoms, and help prevent long-term damage.
Jed’s Message for Fellow Ankylosing Spondylitis Patients
Even though Jed knew he had AS, he still struggled to find doctors who would help him get on the right treatment. He strongly urges people to push their doctors to do a thorough exam and explore all their options. “Your doctor works for you. You don’t work for your doctor,” he says. “So if what your doctor’s telling you doesn’t make sense, tell them that. Don’t ever leave a doctor’s office unsatisfied.”
He also acknowledges that AS can take an emotional toll. “You may sometimes feel alone. That’s one of the worst symptoms of AS is that you feel alone,” he says. “Ankylosing spondylitis is a big, scary-sounding disease, all 21 letters, but it does not have to be scary. There are treatments for it. There are people who are willing to help you. There is life after your diagnosis with AS.”
Could your chronic back pain possibly be ankylosing spondylitis too? Learn more at creakyjoints.org/backpain.