Ankylosing spondylitis is a progressive form of arthritis that can be downright, debilitatingly painful. It’s true that it can be a discouraging diagnosis, but what better way to lift the spirits than to seek the successful movers and shakers in our world who live with this condition? In this article, we’ll share 3 of the most famous people with ankylosing spondylitis, who don’t let their condition define them or limit their success.
Before we do, it’s important to address the reality of this inflammatory condition that affects 1% of the worldwide population.
This form of arthritis primarily impacts the spine and the sacroiliac joints, where the pelvis meets the spine. Those living with ankylosing spondylitis may deal with chronic back pain, neck pain, and stiffness in the lower back and hips. In severe cases, spinal fusion may occur.
While ankylosing spondylitis is a form of inflammatory arthritis, it is also a recognized autoimmune disease that may flare up throughout your life.
There is a long list of ankylosing spondylitis symptoms you may experience which may cause debilitating pain. However, ankylosing spondylitis never stopped these successful people from reaching their dreams and life goals.
When talking about famous people with ankylosing spondylitis, these two men come to mind – the two are very different, but both doing amazing work to bring awareness to the condition.
We’d like you to meet two notable people living with this condition, yet leading remarkable lives.
Reynolds is one of the most notable and outspoken famous people with ankylosing spondylitis. Since 2016, when he first opened up to an audience at one of his concerts about living with this condition, he’s been working to raise awareness for this autoimmune disease.
Reynolds stood on the stage with thousands of people hanging on his every word, he said “I’ve never said this publicly ever, but I’m just going to say it because it’s part of my life now. Does anyone out there suffer from any kind of disease? No one ever wants to raise their hands —I have something called ankylosing spondylitis. It’s an autoimmune disease, and I’ve never spoken about it because, frankly, I’ve been embarrassed. And tonight I’m going to share it because there are probably other people out there who suffer from it too.”
This lead singer started to have symptoms when he was only 21 years old and it continued to worsen until around when his band was starting to get traction. He old People magazine “It was beyond the pain that you feel when it’s just a backache. It felt like someone was drilling my nerves."
It got to the point where he couldn't perform. “I couldn’t get on stage. I couldn’t move, I couldn’t sleep at night, I couldn’t perform without standing perfectly still. I couldn’t sit down for more than a half an hour.”
Taking immunosuppressant drugs caused him reoccurring sinus infections and he worried pain medication use could affect his vocal cords. While this doesn't work for everyone, one of the things he advocates for is the natural (as possible) treatment of this condition. He follows a strict anti-inflammatory bone-friendly diet. And a steady workout regime has also been a game-changer for Reynolds.
His workout regime is not just about getting ripped, it's about keeping his arthritic condition under control.
It’s worth noting that this doesn’t work for everyone with ankylosing spondylitis and prescribed medications from your doctor are likely a must to manage the condition.
This lead singer told Everyday Health, “When it’s raining, when it’s storming, you can either hide or you can take action. The No. 1 thing I needed to do was to take action. So I went to see a rheumatologist.”
Reynolds has a unique rock and roll lifestyle and has to contend with managing two inflammatory diseases -- ankylosing spondylitis and ulcerative colitis. He works with his doctors to ensure his conditions are well managed and his career has never been better. This condition made things tricky for him, without a doubt, but he’s certainly persevered and made a name for himself.
When Helgi was 19 he awoke one day and couldn’t move, his limbs felt locked in place. Doctors soon diagnosed him with ankylosing spondylitis.
Looking at Heligi, a former Winnipegger now living in sunny Florida, it’s hard to believe this tall, lean, and strong young man deals with a chronic disease that could debilitate someone.
Now 39, Heligi finds himself partaking in endurance sports and at the front lines of ultramarathons. While he has treated his condition traditionally with various medications, he has dedicated himself to using movement as medicine. Along the way, he hoped to raise money AND inspire others with ankylosing spondylitis.
In 2021, he completed a triple crown, a runner's ultramarathon traversing 640 miles in three races.
About this race, Heligi has said, "Through social media outreach, articles, and many personal meet and greets at race expos and hospitals over the past five years, I have a captive audience of people cheering for me, the guy who is holding their torch. I'm the person that runs for them because they can't. Or maybe they can, but they are taking it slow and listening to their body, which is exactly what I preach.”
His goal was to complete the race and make a film “that brings one into my headspace during such an epic, challenging adventure while simultaneously giving arthritis patients, ultra runners, and average Joes the opportunity to get involved.”
Despite his debilitating condition, Heligi is a notable competitive endurance athlete and ultra runner. He's dedicated his life to using his body as a tool, even when it feels it's rebelling against him. He feels that he carries the torch for so many with limiting or arthritic conditions and that fuels him. He’s said he “wants to push himself while he can.” Some may criticize the extremeness of his sport, but he says “It’s just my nature.”
At True North Disability Services, we enjoy bringing you inspirational stories of people overcoming their odds. So much can be said about the power of inspiration and hope.
If you or your loved one lives with ankylosing spondylitis, you may qualify for a refund from the Canadian government. We help people every day uncover the disability support they’re entitled to. If want to learn more about the disability tax credit, reach out to our team.