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Peters Township nonprofit raises awareness about rare spinal disease

By Jon Andreassi staff Writer jandreassi@observer-Reporter.Com 5 min read
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Courtesy of Scheuermann’s Disease Fund

Two young fundraiser attendees wear shirts that show what Scheuermann disease can do to the spine.

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Courtesy of Scheuermann’s Disease Fund

A group photo of Scheuermann’s Disease Fund volunteers at a fundraiser in 2019

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Courtesy of Scheuermann’s Disease Fund

Doug Strott with volunteers, from left, Sharon Skittle, Terri Falce-Krivanek, Jenn Scott, Chrissy Simko-Jacobs and Tootsies Diner owner Coleen Melani-Baldwin

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Courtesy of Scheuermann’s Disease Fund

Tootsies Diner owners, from left, Steve Baldwin and Coleen Melani Baldwin, Doug Strott and fiancée Jenn Scott, and actors Juliet Rylance and David Condrad, at a fundraiser last August

For Doug Strott, the realization that something was wrong with his body came when he was 17.

During a track team practice at Baldwin High School in 1981, he was unable to extend his back for an exercise. His coach sent him to the doctor.

“My doctor took an X-ray, identified something was wrong and sent me directly to an orthopedic surgeon. They identified when I was about 17 years old that I had Scheuermann’s Disease,” said Strott, now a resident of Peters Township.

According to the National Institute of Health, Scheuermann’s Disease can result in excessive curvature of the spine. It is also known as Scheuermann kyphosis, kyphosis being when the curve of the spine causes a hunchback. The disease usually presents itself during adolescence.

It is a rare condition, occurring in only about 5% of the population. When Strott received his diagnosis, little was known about Scheuermann’s Disease.

“(My doctor) explained it to me this way. He said, ‘Doug, your head and hips, this disease causes them to be pulled out in front of your body’,” Strott said. “Now, what happens is when your head goes out over your body, it’s like for every inch your neck is carrying an extra 10 pounds.”

At the age of 40, Strott says his spine failed. He had five surgeries in the span of three years, and had to give up his dream job as a regional director for Dimensional Fund Advisors.

He has since made it a personal mission to help others suffering from the disease.

“Now, a total of eight spine surgeries later and a page of diagnoses later, I have learned the most important thing in life. They say the two best days in your life are when you are born and when you realize why you were born. Now I know why,” Strott said.

Strott started the Scheuermann’s Disease Fund in 2014. It originated as a charitable fund under The Pittsburgh Foundation, but in 2017 became its own registered nonprofit. Strott operates the organization out of his home in Peters.

The primary goal of Strott’s charity is to raise awareness about Scheuermann’s Disease.

“The hard part about this is there are no long-term studies. Now, once a child goes through this and has Scheuermann’s Disease … their doctors may not identify this at all. These people may go through this into their 20s and 30s, and all of a sudden that pain hits,” Strott said.

He added: “Construction workers, servers, salon workers, people that are on their feet all the time. Those people, we find, are hit the hardest.”

When even doctors are unable to determine what is wrong, Strott said it puts Scheuermann’s patients in a difficult position where friends and family may believe the pain is just in their head.

The Scheuermann’s Disease Fund sends out care packages to people who think they may have the condition. Along with t-shirts and wristbands, those packages also contain informational pamphlets about both the charity and the disease.

“This is how we help. You would call you friends and say, ‘I want you all to come over just for 10 minutes.’ You say, ‘Look, the disease I have is real. Do you see this? This is a charity that supports people like me’,'” Strott said.

The organization has helped people in 46 countries, according to Strott.

His charity also helps people find a doctor that can help them. The website has a database of doctors who have seen and treated Scheuermann’s Disease patients, a valuable tool for a condition not every doctor may be able to recognize.

“There are over 3,000 rare diseases. When you talk about having doctors needing to understand the main diseases, let alone the rare diseases, that’s a huge undertaking,” Strott said.

Doctors are added to the database only when a referral is received from a patient. Doctors can’t add themselves to the list.

“So we have hundreds of doctors throughout the world, (and) people can look to see if there is a doctor that lives near them,” Strott said.

The final piece the Scheuermann’s Disease Fund focuses on is research. The website also contains a questionnaire for Scheuermann patients that focuses on secondary health problems they develop.

Strott explained that data is shared with the Coordinators of Rare Diseases at Sanford, who then makes that data available to any researcher conducting a study on the disease.

“We’re providing those researchers with the data they need to hopefully do research studies on Scheuermann’s as we age. That can positively affect treatment protocols for people and adults with Scheuermann’s,” Strott said.

The charity has an annual fundraiser. This year’s event will be held Sunday, Sept. 25, from 12:30 to 4 p.m. at The Alpine Club, 220 Alpine Road, Bridgeville.

Tickets are $15 each, and admission is free for anyone under 12. There will be a buffet and cash bar. More information can be found at sdfund.org.

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