Ricky White had been working as an ICU nurse in England when lower back pain began to interfere with his job. A colleague at the hospital where he worked suggested he might have spondyloarthritis (SpA). But his primary care doctor dismissed the notion and sent him on his way with pain relievers. It wasn’t until another flare brought him back that he got a crucial second opinion – along with an HLA-B27 test and a referral to a rheumatologist.
As his symptoms worsened, White, then 26, found he could no longer perform his ICU tasks. He moved to a new job in a clinic setting, and after exams and MRIs, finally got his diagnosis in 2010. His new rheumatologist scrawled “severe AS” on his chart and prescribed a biologic.
Still, despite being a registered nurse, he knew no one else who had AS. “I didn’t cope very well at all,” White says, recalling years in which he struggled with depression and limited mobility. During a particularly bad flare, a walk to the bathroom would take him 10 minutes. Eventually he got to a tipping point with his physical and emotional suffering. “There comes a point where you either subdue to it, or you have to start fighting back. I thought, either this is my life now, or I can do something about it. I made a conscious decision to fight back.”
White’s main weapon in his battle against AS is a common lifestyle change: more movement and exercise.
“Exercise has a significant impact on my wellbeing,” says White, now the president of Walk AS One. “Not only has research proven that exercise leads to less stiffness, pain, and fusion in patients with spondyloarthritis, but it has also shown that emotional and psychological wellbeing are positively impacted. I found this to be especially true in my experience with exercise.”
Walk AS One is the nonprofit organization that hosts the popular Walk Your AS Off event each May. Founded in 2012, Walk Your AS Off is a month-long challenge that encourages people across the world to get more active and count their steps toward three goals: To collect enough steps to meet a challenge (in its first year, participants collectively walked around the Earth), to elevate SpA awareness, and ultimately, to encourage people to start exercising to improve their health. The 2021 Walk campaign is scheduled to go on as normal – and this year, to mix things up, organizers will also offer a roster of Zoom classes that participants can try right at home.
White, plus Walk Your AS Off founder Jennifer Visscher and other volunteers, have built a beloved legacy uniting members of the global SpA community around a shared commitment – adding more movement into their lives. It’s a mission the Spondylitis Association of America (SAA) has long promoted, through webinars, online programs, as well as our video of exercises developed for those living with SpA, “Back in Action, Again.” Medical experts agree: In no other type of arthritis is the role of exercise more important.
“I was never an athletic person. I’ve known so many people who think, ‘I don’t want to go for a walk; I don’t feel well, my joints hurt,’” recalls Visscher, an artist and advocate known for her “Art Apple A Day” project before she began Walk Your AS Off. “For me, I was surprised that it helped me that much.”
Visscher, who started as an exercise skeptic, came to embrace the benefits of activity during her SpA journey. “One of the big lessons was, you’ve got to keep moving. I thought, well, if that’s what they’re saying, let’s give it a try – and then get other people to give it a try.”
The first Walk Your AS Off in 2012 was a grassroots success story. Visscher coined the event’s tongue-in-cheek title, created a Facebook page, and set a stretch goal of gathering 1 million steps between teams of participants during the month of May. But word traveled fast, sign-ups spiked, and she realized she needed to look beyond the horizon for a new challenge. Her updated goal: circling the globe.
In that first event, participants hit the goal and then some. “It was so great to see – this might actually affect peoples’ lives, not just raise awareness,” Visscher recalls. “There are so many ripples and that makes me happy.”
By its third year, the event’s popularity reached the moon – literally – as participants recorded enough steps to arrive at their lofty lunar target. Every year, the event’s reach grew and grew.
After the fourth event in 2015, its organizers began to think outside the walk. “What we found was that people were getting more active in May, and they were seeing a benefit from being more active – they had more energy, they were feeling better, their pain went down – but as soon as May finished, they went back to their old habits,” recalls White, who had been volunteering regularly with Walk Your AS Off. “If you only do something for one month out of 12, you don’t really see long-term benefits from that.”
He, Visscher and other volunteers decided to set up a nonprofit organization, Walk AS One. Their aim is to host their flagship event, Walk Your AS Off, each May, but also to host smaller events throughout the year to inspire people to get moving more often.
White’s biggest motivator to stay active? His weight. After moving to the U.S. in 2014 and trading in his nursing career to be a stay-at-home parent – with the refrigerator a stone’s throw away – he realized the extra pounds correlated to more pain. Looking for a fun way to exercise as well as make friends in his new country, White walked into a martial arts studio and took up karate. He dropped weight, gained flexibility, and watched his pain scores plummet.
“I’ve always preferred social forms of exercise, as AS can often lead to feelings of isolation,” he says, chalking up his karate achievements to a relatively fast diagnosis in just three-and-a-half years. The online grapevine that connected him with Visscher and Walk Your AS Off was filled with many others who shared similar struggles with depression and motivation.
“What’s difficult when it comes to AS is, we can get really sick, we don’t know what’s going on; it might take 10 years or more to get a diagnosis… and every year, we’re going downhill,” explains Visscher, who is HLA-B27 negative and waited 10 years for her own diagnosis. “If you finally get to a place where you’re getting treatment and you start to feel better, it’s hard to shift out of the mindset that you’ve been stuck in.”
Many living with SpA are afraid of pain and flares. “I myself have spent a lot of years in a lot of fear of the pain coming back,” Visscher admits. She made it her mission to comfort those on the fence about Walk Your AS Off. She began encouraging participants with slogans like, “Find your happy pace,” and “Every step counts.”
The event is not a race, nor a competition. Participation is open and accessible to all, whether a person can contribute 100 steps or 1 million. Any activity – martial arts, cycling, yoga, even gardening – can be converted into steps with a handy conversion chart. If you use a wheelchair, you can also track and submit your miles as steps.
Although she stepped down as a walk organizer a few years ago, Visscher still tears up when she considers its transformative power. She envisions the walk as “a spark” for those who need to hear and see stories of success to reclaim their belief that they, too, can change their lives.
Not even COVID-19 could dampen participants’ spirits during last year’s walk. The 2020 Walk Your AS Off closed with a final count of 96,004,231 steps. Exactly 404 participants took part in 29 countries – either contributing individually or as part of teams.
The event’s total step count, since 2012, is astonishing: 2,681,585,139. Yes, that’s more than 2.6 billion.
Also astonishing is the walk’s next stretch goal: collecting enough steps to walk to Mars. (That would require an additional 316 billion steps.) But the Mars challenge, White knows, will be more of a marathon than a sprint. He’s hoping to get there in 10 years – not coincidentally, the average length of time from SpA symptom onset to diagnosis. By raising awareness, he hopes to help bring about educational changes that will shorten that time.
Meanwhile, he hopes more members of the SpA community will take up the challenge to better their health – one step at a time.
“It doesn’t matter what your ability is. It’s about improving yourself,” White says. “If moving feels good today, how about tomorrow you do 10 extra steps?”
To sign up for this year’s walk, visit walkasone.org and click “sign up.” Email info@walkasone for more information, or to be matched with a team in your area.