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How They Did It: 5 People With Ankylosing Spondylitis Who Realized Their Dreams

Last updated: 07-01-2020

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How They Did It: 5 People With Ankylosing Spondylitis Who Realized Their Dreams

Take a moment to picture your heart’s desire. Is it to run a 5K? Raise a family? Write a novel? If living with ankylosing spondylitis makes you think achieving these goals is longer possible, know that the condition doesn’t have to stand in the way of your dreams. “Ankylosing spondylitis is a form of inflammatory arthritis that disproportionately affects the spine.” says Susan Goodman, MD, a rheumatologist at the Hospital for Special Surgery in New York. In mild cases, the condition may be marked by chronic back pain and stiffness; in more severe cases, the vertebra can become fused together, leading to extreme loss of motion. “People with ankylosing spondylitis may feel physically limited, and depression is common, too,” she adds. But striving to achieve personally meaningful goals can lift your mood — and with the right plan of action, even help alleviate ankylosing spondylitis symptoms. Here are five inspirational stories of people who achieved big personal successes after an ankylosing spondylitis diagnosis.

Soon after being diagnosed with ankylosing spondylitis in 2007, Phil Donlay of Missoula, Montana, sank into a deep depression. His diagnosis meant that he had to give up a prized career that had largely shaped his identity. “All I had ever done was fly,” he says. “My whole skill set as a professional pilot now felt worthless.” As he came to terms with the condition, however, he realized he would have to reinvent himself and find a new way to move forward. So he turned to another outlet that let his spirit soar: writing. With six novels published and a seventh on the way, Donlay believes he chose the right goal. “Writing gets me out of bed in the morning,” he says. “It stimulates my brain and keeps me going. It has given me new purpose.” Although some days the physical limitations of ankylosing spondylitis prevent him from writing, Donlay has learned to adjust. During a flare-up, he takes a break and lets it run its course. “There are days when my job is not to write but to just get through the day,” he says. But, he says, there’s a bright side: “[It] gives me something to look forward to. I know the flare-up won’t last forever, and then I know I can write again.” 

Naomi Ban, a personal trainer and kinesiologist in Montreal, had always been a competitive athlete, chalking her aches and pains to sport-related injuries. That is, until 2013, when a new kind of pain set in — one she couldn’t ignore. “It felt like someone stabbed me with a knife in the lower back, twisted it, and left it there for eight months,” she recalls. Upon receiving her ankylosing spondylitis diagnosis shortly thereafter, Ban was told to stop weight training and impact sports. In the absence of sports, Ban slipped into depression, and that’s when she realized she couldn’t give them up for long. So she studied the condition and devised a new training approach tailored to ankylosing spondylitis. With this new approach, Ban regained both the muscle she had lost as well as control over her life. She is now largely symptom-free. In 2009, she founded the company NBworkout, which allowed her to formalize her approach and bring it to dozens of clients with ankylosing spondylitis. “I realized that so many people with the condition thought there was nothing they could do to improve their quality of life,” Ban says. She also shares solutions and advice on staying positive through her Facebook page, “Training with Ankylosing Spondylitis.” For Ban, the experience has taught her the importance of not being passive in moving toward your goals. “It’s pretty amazing that this dark event in my life turned my passion for training into a vocation to help others find that part of their lives they thought they had lost,” she says. 

When healthcare marketing executive Bill Balderaz was diagnosed with ankylosing spondylitis in 2011, he was in constant pain. Balderaz, who owned his own business, worried that his symptoms would start impacting his work and his time spent being active with his family. “I remember going to the doctor almost weekly for a new symptom,” he recalls. But one particular visit, when his doctor told him that he had no choice but to live with his ankylosing spondylitis symptoms, triggered Balderaz to make a change. “That’s when I became determined to beat ankylosing spondylitis,” he says, adding that he still recalls the drive back from that appointment. Balderaz began by making several life changes. He eliminated his trigger foods, changed his workout program to strengthen his core, and found a good physical therapist. These changes helped alleviate his symptoms over time to the point that, with his doctor’s guidance, Balderaz was able to wean off medications he was first taking to manage the condition. Today, Balderaz continues to stay active: He runs 5K races, goes skiing and boating with his kids, and works out regularly. He has even started another business. While he still has bad days with significant pain and swelling, Balderaz feels much more in control of his life and his body. He believes in taking an active approach to managing ankylosing spondylitis: “The best thing you can do,” he says, “is to find what works for you and to take control.”

“You are not alone with ankylosing spondylitis, so never give up!” says Amber Panagos, a mom of two in Newberg, Oregon, who was diagnosed with advanced ankylosing spondylitis at age 34. Panagos has truly not been alone on her journey with the condition — she has found ways to involve her loved ones at every step. Upon diagnosis, Panagos’ biggest goal was to raise her daughters well. “Pain and fatigue are my biggest hurdles, and children have no concept of either,” she says, “so keeping up with them was, and still is, extremely difficult.” To meet the challenge, she began educating herself on ankylosing spondylitis, reading up on every medication, diet, and exercise regimen available that would help alleviate her symptoms and allow her to be more present with her kids. As her daughters (now ages 10 and 7) grew up, she also took steps to talk to them about her ankylosing spondylitis-related issues and limitations. “One of the biggest things I’ve learned is to ask for help when needed, which does not come easily for me,” she says. The more her family understood her condition, the easier life became for all, Panagos says. Today, Panagos, along with her husband, continues to raise her two girls while also raising education and awareness about ankylosing spondylitis through online groups and her Facebook page, SpondyMom. “Knowledge is power,” Panagos says. “The more you know about ankylosing spondylitis, the less likely it is to take over your life and keep you from doing what you want to do.”

When Ricky White, a stay-at-home dad in Alexandria, Virginia, was first diagnosed with ankylosing spondylitis in 2010, he was advised to stay away from contact sports in order to mitigate the risk of injury. But by 2014, his weight gain had become significant, and he wanted to take better control of his health. “It hit me just how much my young children looked up to me,” he says. Wanting to lead by example, he took up a healthy diet and began training in martial arts. Although losing weight seemed difficult at first, he found a good instructor who helped him adjust his training according to his symptoms. Today White has lost more than 35 pounds, a weight loss feat that has led to significant reductions in ankylosing spondylitis symptoms. “My core is stronger, I’m more flexible, and my daily pain levels have reduced to a minimum — as have my medications,” he says. While training was not always smooth sailing, through trial and error, White found his limits. “For example, it takes me two days to ‘recover’ after two hours of training,” he says. “But the pain is different than before and much easier to manage with hot/cold therapies.” Beyond meeting his weight loss goal, White is about to achieve another big milestone inspired by his life with ankylosing spondylitis: publishing his first book, Taking Charge: Making Your Healthcare Appointments Work for You. White’s best advice for meeting goals when you have ankylosing spondylitis: “Don’t let fear hold you back. Often, people concentrate on what they can’t do anymore rather than what new things they can now get to learn.”

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