By Jill Thurston
Doug Strott of McMurray was fit and strong 37 years ago as a Baldwin High School athlete before a scarcely known disease that can lead to debilitating pain robbed him of the mobility he once took for granted. And today, he is making it his mission to alert doctors, parents, coaches, and student-athletes across the world about the debilitating disease that can be treated if caught early.
An accomplished athlete, Strott began having back pain playing football when he was 13. He was given some extra padding, which did little to help the pain, and he figured football just wasn’t his game.
He instead concentrated on basketball and track. At 17, he couldn’t complete the required back extension exercises during track practice for throwing the javelin. The track coach stopped him immediately and said he needed to see a doctor before returning to track. His family doctor then sent him to a surgeon.
That appointment changed the course of Strott’s life. The surgeon confirmed from the X-rays that Strott’s problems were caused by a spinal disease called Scheuermann’s Disease (pronounced ‘shermans’).
Scheuermann’s is a curvature of the spine formed in adolescence and is believed to affect anywhere from two and eight percent of the population.
Strott now knows that if detected in adolescence while a person’s bones are still growing, Scheuermann’s is treatable. In his case, it was diagnosed too late. His bones were already formed.
Strott admits not much was known about the disease when he was diagnosed in 1981. Scheuermann’s is often noted by a “hunched back,” or a “C” curve (known as kyphosis), usually in the thoracic region with additional physiological changes to the body. It is attributed to a lack of blood flow to the vertebral plates leading to uneven growth of a person’s spinal vertebrae. Scheuermann’s typically presents itself during adolescence when the vertebrae change from a brick shape to a wedge shape. The anterior longitudinal spinal ligament thickens, which can lead to significant health conditions later in life.
In Strott’s case, he experienced progressively acute back, arm and leg pain, limiting his activities and movement. By 2007, he wrote on his website, he was almost unable to walk as his pain significantly increased, and daily activities became all but impossible.
Baldwin High School classmate and friend, Sharon Chalovitch Skittle, remembers Doug as a dominant school athlete.
“He still looks so powerful to me. He seems so strong and to know he’s in that kind of pain is heart wrenching.”
“There are a number of doctors in the United States and throughout the world that think kids grow out of Scheuermann’s disease in adolescence. That couldn’t be further from the truth. It’s formed in adolescence but it also forces your head and your hips out over your body causing problems in the cervical and lumbar spine. Once those curvatures happen, every inch your head goes forward from your spine feels like there is an additional 10 pounds of weight on your neck. If your curvature from Scheuermann’s places your head over your body by three or four inches, you are talking an added thirty or forty pounds that your neck is supporting on a daily basis,” Strott explains. This also increases the risk for early onset of degenerative disc disease, compression fractures and spinal cord compression.
“That’s why you have to be diagnosed at a young age; you need to be diagnosed while your bones are still forming for the doctors to be able to use bracing and exercise as effective treatments. But if your bones are formed, there is one viable treatment and that’s surgery,” Strott said.
His doctor advised him to stay healthy, keep his weight down, exercise and “hopefully everything will be OK.”
That wasn’t the case. He followed doctor’s orders and even wore a back brace during college designed to help straighten his spine and strengthen his core.
As Strott aged, the secondary effects from having the spinal deformity increased and led to early onset of degenerative disc disease, spinal stenosis, central canal stenosis, compression fractures, sciatica in both legs, sleep apnea and cervicogenic migraines, he said.
In 2010, his spine “failed,” forcing him to leave his job as regional director for Dimensional Fund Advisors in Austin, Texas. Strott endured a series of five major back fusion surgeries over three years to retain some mobility and help mitigate some of the pain caused by the disease.
He then returned to Pittsburgh with his now fiancé, Jennifer Scott, to be closer to family for both of them.
“A lot of us didn’t know when he was in Austin what was going on,” said Chrissy Simko Jacobs, close childhood friend and classmate.
When Strott didn’t show up for the 30th class reunion in November 2013, he received text after text asking where he was and why he wasn’t there.
Now dependent on a cane and self-conscious about his condition, he stayed home. “It was one of those humbling moments,” Strott recalls. That was seven years ago. “Now I wouldn’t think anything of it. But at the time I didn’t want to go.”
At the end of the reunion, his classmates, led by Skittle, voted overwhelmingly to donate $735 leftover from the evening to a charity for Scheuermann’s disease to help Strott and others.
“I was thrilled, but there was a big problem: there wasn’t a charity for this disease ... I had to create one.” Along with Jacobs and 1988 BW graduate Kevin Baverso, the groundwork was laid for the Scheuermann’s Disease Fund. Strott met with the Pittsburgh Foundation to set up a charitable fund, and Jacobs served as his right hand. Baverso served as the graphic designer and created the logo and the format for the website. Once large enough, the fund eventually secured its own 501©(3) status.
In 2010, as the secondary problems from this disease mounted and his severe chronic pain became uncontrollable, Strott went on permanent disability. It was the first time in his life he wasn’t working and contributing to society. “I cried many nights. It was horrible but I knew I wasn’t able to cognitively and physically do what I was previously capable of doing,” he admits.
Jacobs sees the charity as a godsend for her lifelong friend.
Strott put his combined extensive experience in financial services with the knowledge he gained from learning about the disease and set to work. One of the first things Strott and Jacobs determined was that they knew Strott would not benefit from the charity, as it was too late for his health to improve. However, they decided the best way to help others would be to create a charity to educate the public of this spinal deformity, enhance early detection in adolescents, and collaborate with the medical community to understand better the long-term secondary effects Scheuermann’s can cause.
Strott assembled an advisory board of doctors, and some were his own doctors. He created the first international doctor database of doctors who are familiar with treating Scheuermann’s. “When you find a doctor who knows what they are doing and understands these secondary issues, you keep them. So if you are from the U.S., Germany, France, United Kingdom, Australia, you can look on this site and hopefully we will have a doctor near you that understands how to treat SD.”
He serves as an administrator on two support groups available on Facebook for people affected by Scheuermann’s. The Scheuermann’s Disease Fund website has become the repository for information collected from medical professionals on the disease: what causes it, how it is diagnosed and resources for seeking treatment.
To fund the charity, his Baldwin classmates surrounded him with support. Each year his family, friends, and high school friends have turned out to volunteer for the annual Scheuermann’s Disease Fundraiser held at the Alpine Club in Bridgeville.
“It’s so nice to see our classmates all band together for the events,” said Skittle. She is proud of what a caring group of adults her classmates have become. If not for the coronavirus pandemic, this year would have marked the seventh annual fundraiser. The fundraisers fetch between $15,000 and $22,000 each year.
His alma mater has taken notice. In June, Strott (BHS ‘83) was inducted into the Distinguished Highlander Hall of Fame by the Baldwin-Whitehall Educational Foundation, for his global efforts to raise awareness about Scheuermann’s Disease.
Also inducted with the class of 2020:
Pennsylvania State Senator Pam Iovino, 37th State Senatorial District (BHS ‘74)
Regis O’Keefe, MD, Ph.D. (BHS ‘77), Chair of the Department of Orthopaedic Surgery at Washington University School of Medicine
Heather Tomko (BHS ‘06), Outreach Coordinator, National Research and Training Center on Family Support, University of Pittsburgh
Erik Arroyo, BWEF president, said that Strott’s story is one of personal triumph about how he had to overcome adversity and live life with Scheuermann’s Disease. “But the way it fueled him to help others afflicted with the disease was a compelling angle for us. He created a website to offer support to others living with Scheuermann’s Disease and it immediately connected him to a global network that ultimately resulted in the founding of the Scheuermann’s Disease Fund. That is the exact type of inspiration we are looking for from Distinguished Highlanders … folks who set the bar high for the next generation and represent this school district so very well. The Scheuermann’s Disease Fund has supported those living with the disease on six of the world’s seven continents, you can’t ask for much more unless you plan on taking it to the moon.”
Strott knows there is more to be done and more people to reach. As a means to that end, the SDF volunteers send free care packages to patients and their families all over the globe that include two pamphlets explaining the disease, a t-shirt and wristbands. Strott is searching for funding for the first two comprehensive long-term studies on Scheuermann’s, where he completed the protocols and budgets. Before this, he said, there was only one long term study done, and it involved only people from Finland.
Long term, his goal is to see Pennsylvania schools test for kyphosis, the “C” curve that can serve as a precursor to Scheuermann’s disease along with scoliosis, another spinal deformity. Strott has gained an ally in Senator Iovino, his fellow inductee to the Distinguished Highlander Hall of Fame, as he seeks to have kyphosis added to the screening protocols in Pennsylvania – and, he hopes, other states as well.
According to Iovino, “Doug and I grew up together, our families living around the corner from each other in Whitehall. College, careers and life took us both away from here for some years, but like so many Pittsburghers, we boomeranged back. We reconnected through our families, and at that time I learned of Doug’s founding of the Scheuermann’s Disease Fund. I wanted to help and asked him what that might be. Among the objectives that Doug envisioned for SDF was the goal of navigating the regulatory process to add kyphosis to the list of required school screenings in Pennsylvania. I jumped at the opportunity to help and arranged meetings with the Secretary of Health to discuss the way ahead to add these screenings. We have a number of hurdles to cross before we can achieve this goal, but I could not ask for a better advocate to partner with than Doug. I am hopeful that together, we can achieve early detection of kyphosis in Pennsylvania’s youth, and in doing so, significantly improve the quality of life for those that might be diagnosed with Scheuermann’s Disease.”
He knows that time is the enemy. Strott’s spine is fused from C2-T2 and L4-L5-S1 vertebrae. He has a pain medication pump implanted in his side that helps very little. He can sleep in only one position, in a sitting position with his arms and neck supported. He suffers from two forms of sleep apnea and uses a BiPAP machine. “I don’t get much sleep,” Strott says with a laugh.
But he continues to be upbeat. “I look at all of the other people who have much worse curvatures than I do, and think, there but for the grace of God go I … I got that from my Dad. He always left people feeling happy, so why can’t I?”