Sep 8, 2014 4 min read

Doug Strott remembers he had a growth spurt between the ages of 12 and 14 years when he grew about 10 inches taller. When he was 17 and was throwing javelin on his high school’s track team, he began to have difficulties bending backwards. After a battery of tests, he was diagnosed with little known – and little funded – Scheuermann’s Disease, often referred to as Scheuermann’s Kyphosis. If Strott had been diagnosed sooner, his life would have been easier.

Now, at the age of 49, Strott, of Peters Township, relies on a cane to steady his gait and to retain his balance, and on an implanted pump to help control his pain.

As the disease progressed, Strott said he had to abandon his dream job in the financial field in 2007, and now lives on permanent disability.

“This is going to be the disease that kills me,” Strott said.

If – and he is delaying the surgery because of only a 20 percent success rate – Strott has a complete spinal fusion, he will be left with only one functioning disc in his spine. And that disc, he said, controls the nerves to his organs, and when the blood flow from that disc is eventually compromised because of stenosis, his organs will begin to shut down.

“I’m trying to hold off as long as possible,” Strott said of the fusion.

Scheuermann’s Disease was first discovered in 1921 and is described as changes in the vertebrae and disc spaces that can lead to a roundback deformity of the upper spine. About 25 million Americans are affected, however, the disease is not widely known and is frequently misdiagnosed.

Strott knows all too well how the disease has altered his life and is organizing a fundraising event at the Alpine Club in South Fayette to raise not only money and awareness of the disease. He hopes all of the money raised during the event from 1-4:30 p.m. Sept. 14 will go toward funding long-term research so others will not have to suffer as he has.

“I’m not doing this for me,” Strott said.

The cause of Scheuermann’s Disease, often pronounced Sherman’s Disease, is not known, but there are theories that blood flow to the vertebra plates is interrupted during growth spurts and is found primarily in boys. If diagnosed early, before the age of 14, the condition can be successfully treated, Strott said. He was not diagnosed until the age of 17, so there was little that could be done, he added.

Strott has had seven spinal surgeries – five within two years – that he called serious spinal fusion surgeries. Those procedures ended his career.

“However, even though I cannot perform my previous duties in the job I loved, I was determined to spend my time helping those suffering from the same terrible disease. That is how The Scheuermann’s Disease Fund was born,” he said.

The fund was accepted into the philanthropy program of The Pittsburgh Foundation. That acceptance, Strott said, gave the fund credibility, aids him in the legality of running a non-profit organization and permits him more time to raise money to fund research.

The Sept. 14 fundraiser is the first in the country and possibly the world, he said. All of the proceeds will go to fund research.

Tickets are $10 and include a buffet and non-alcoholic beverages. There will be a cash bar. Other activities include cornhole, bocce ball, face painting, a photo booth, caricatures and silent and Chinese auctions. The event will be held rain or shine and is free for those under the age of 12.

For tickets, call Strott at 724-436-1271, or visit scheuermannsdisease.org or sdfund.org.