KD Sunday Spotlight: Turning pain into purpose, fighting back against Scheuermann's Disease
WASHINGTON (KDKA) - If you've been diagnosed with Scheuermann's Disease, you are not alone.
A Washington County man has been living with the rare spinal disease for more than 40 years and he started the only nonprofit organization in the world that's helping others with the same diagnosis.
Doug Strott always loved playing sports and staying active but at the age of 17, his life was turned upside down.
His track coach at Baldwin High School noticed something unusual and that's when it happened.
"I couldn't do some of the exercises and he said, 'there's something wrong, go get a doctor's excuse and come back,'" Strott recalled.
He ended up being diagnosed with Scheuermann's Disease, a spinal deformity that is difficult to diagnose as it typically presents itself during adolescence. It can show up as a hunch in the back but it also causes physiological changes to a person's body.
"Once a person's bones stop growing, those changes become permanent, so when those become permanent, the only treatment option after that, and it usually after puberty is really invasive spinal fusion surgery, so they caught me too late," he explained.
When he was in his early 40s, his discs were so eroded, he had to undergo five fusion surgeries in a three-year period.
He was living in Austin, Texas, working his dream job in the financial services industry.
"I could no longer work, it was rough," Strott said. "It's still hard, as you can tell it's hard to talk about."
Strott decided to use his pain to give hope to others.
He started a blog and received hundreds of requests for information from people around the world. Then, with help from his high school friends, he founded the Scheuermann's Disease Fund, the only 501c3 nonprofit of its kind.
Now, Strott lives in Peters Township, and his organization is made entirely of volunteers. They just celebrated 10 years in October and did so with their big, annual fundraiser.
The charity works to improve recognition of the symptoms and early detection in adolescents.
"If you have a child or if you're coaching somebody and they're bending over or hunching over all the time and you say sit up straight, stand up straight and they say 'I can't or it hurts,' take them right to the doctor to get an x-ray," Strott said. "That is the best way to find out if you notice them bending over and there seems to be a hump or a hunch in their back."
The organization also helps the medical community understand the long-term secondary effects the disease can cause for adults.
They also send free care packages around the world with pamphlets, wristbands, and t-shirts, which are purple for Baldwin High School. That also includes school visits and community events.
For those battling the disease, their website offers tons of helpful information, including social media support groups along with an international doctor database.
"We started to document the doctors who were successful at treating people, and now we have hundreds of doctors in our database that people can through and find a doctor that may be able to treat them that may be in their region," he said.
Strott said he is in constant pain and discomfort because of the disease.
"I can tell when it's going to rain, my legs hurt, they thump all the time, I have radiating pain down my arms, I have shooting pain, I have dull pain, it's almost like electrical charges will go off and my body will just jerk and it doesn't stop," he explained.
The work he is doing will be felt for many years to come.
Volunteers, who have become friends and family, spend months organizing their main charity event.
"It's one of the best things I've ever done, we've helped people in 50 different countries, and we have some of the best volunteers, wonderful people who help us during our annual fundraiser," Strott said.
This year, they raised almost $21,000 in donations - every dollar the Scheuermann's Disease Fund receives helps others who know what it's like to see multiple doctors and feel like nobody believes them.
"Never give up, we'll find somebody to help you, you're not alone, there are thousands and thousands of people out there who care," Strott said.
He also said he's just a phone call away.
"This is where I'm supposed to be," he said. "What's Mark Twain's saying? The two best days of your life are the day you're born and the day you figure out why you're born… and this is why I'm here, I'm here to help."
Strott said there isn't one long-term comprehensive study on the secondary effects of Scheuermann's Disease and he's partnered with the Coordination of Rare Diseases at Stanford University to develop a questionnaire and collect the data to do the research.
If you want to help, you can make a donation and learn more about their efforts on their website right here.
There are also several Facebook pages dedicated to supporting those with Scheuermann's Disease.