Independent filmmaker’s visit aims to draw awareness to rare spinal disease
Sixteen years ago, Cassie Phillips had no idea that she would one day be filming the man she turned to for information about a rare disease afflicting both.
Phillips, 27, an independent filmmaker, traveled from her home in Los Angeles, Calif., to Bridgeville earlier this month to attend the Scheuermann鈥檚 Disease Fund鈥檚 annual fundraiser as part of her documentary about the disease and the people who suffer from it. She was diagnosed at age 11 with Scheuermann鈥檚, which affects between 2 and 8% of the population, 鈥渁fter having really bad low back pain that wouldn鈥檛 go away,鈥� she said.
Phillips is filming the documentary to shed light on the need for further awareness and research. Until recently, she hadn鈥檛 met anyone else with Scheuermann鈥檚 disease.
鈥淟ooking back, everything was so nonchalant,鈥� Phillips said. 鈥淲e didn鈥檛 know anything about this disease. I was prescribed physical therapy. We asked for a brace at some point, but it was always, 鈥楴o, it doesn鈥檛 work.'鈥� She expressed regret in not having a brace. 鈥淚 know I would have stuck to wearing a brace because of how badly, even at a young age, I wanted it to go away.鈥�
Scheuermann鈥檚 disease (SD) is a form of kyphosis, also referred to as Scheuermann鈥檚 kyphosis, and is typically diagnosed in children during adolescence, and many times occurs during a growth spurt, according to Scheuermann鈥檚 Disease Fund founder Doug Strott, of McMurray, who was diagnosed at the age of 17. The cause remains unknown.
While scoliosis causes the spine to form an 鈥淪鈥� curve, with Scheuermann鈥檚, the person鈥檚 spine has an accentuated 鈥淐鈥� curve, or 鈥渉unchback,鈥� occurring in either the thoracic or the lumbar areas.
Unlike scoliosis, Scheuermann鈥檚 causes physiological changes to a person鈥檚 body, Strott said. The shape of the vertebrae changes from a brick shape to a wedge shape, which can lead to early onset degenerative disc disease, among other possible complications. Once an individual鈥檚 bones stop growing, the changes become permanent, and non-invasive treatments, such as bracing and therapy, are no longer effective treatments, according to Strott.
At that point, for those suffering from severe curvature or significant pain, or both, the only proven treatment is spinal fusion surgery, he said. 鈥淎s you age, if you don鈥檛 have the curvature corrected, it can cause significant damage to your spine,鈥� Strott said.
For those whose bones are still growing, a form of therapy called Schroth therapy, coupled with bracing, can be helpful in reducing the curvature, according to Strott. That is why early detection is so important.
Some states, including Pennsylvania, still have spinal screenings in the schools for scoliosis, but it is no longer mandated by the federal government. 鈥淧arents think it鈥檚 been done in schools, pediatricians think it鈥檚 being done in schools, but most of the time it鈥檚 for scoliosis,鈥� Strott said.
Through their efforts, Strott and Phillips hope to raise awareness about the disease.
Strott, 59, created the Scheuermann鈥檚 Disease Fund in 2014. After five difficult and painful spinal fusion surgeries over a period of three years, his spine 鈥渇ailed鈥� at the age of 45, and he was forced to retire. He set out to research the disease that robbed him of his career and much of his mobility and found there was little available online. He began a blog, sharing his experiences, frustrations, hopes and fears.
Phillips found Strott鈥檚 blog. 鈥淲hen I was first diagnosed, there was nothing on the internet. The only information we could find was his blog. And it鈥檚 crazy that now, 16 years later, I鈥檓 filming him,鈥� said Phillips.
Along with the charity, Strott developed an international database of doctors who are either members of the Scheuermann鈥檚 Disease Fund鈥檚 advisory medical or research initiative or have been referred by someone with Scheuermann鈥檚.
At the annual fundraiser, held Oct. 6 at the Alpine Club, Phillips stood straight, a camera strapped to her back, moving carefully through the crowd, often breaking into a smile.
She said her curvature has increased since she was diagnosed and her pain level with it. She believes she will need surgery within five years. Active in high school and college soccer, she suspects that delayed her Scheuermann鈥檚 progression, 鈥渂ut it鈥檚 always been an everyday struggle,鈥� she said. 鈥淓very time I鈥檇 go to seek help 鈥� and as the years went on it would be less and less with more and more time in between 鈥� I鈥檇 hear, 鈥榊ou鈥檙e not a candidate for surgery鈥� because your curve needs to be 75 degrees or higher.鈥� Her curvature is 65%.
At a 2019 spinal deformity conference at Johns Hopkins Hospital, Strott said he learned that the lower the apex of the curvature in a Scheuermann鈥檚 patient鈥檚 spine, the more pain and health problems they tend to experience.
Bill Kachinski, 34, of Chicago, made his way to the fundraiser with the help of his uncle to meet Strott and support the charity. He was diagnosed with Scheuermann鈥檚 at 14.
鈥淔or the first 10 years the pain was pretty manageable,鈥� he said. But it鈥檚 been increasing each year. Kachinski said he鈥檚 been unable to work since 2023 and can鈥檛 sit or stand for long periods. He hopes to have surgery in December or early in the new year, after losing 35 or 40 pounds, as required by his surgeon.
He said his appearance isn鈥檛 what bothers him. It鈥檚 the pain.
鈥淚 really have no choice, because of my lungs. The doctor says I鈥檓 at 50%. I can鈥檛 breathe deep and I get winded.鈥�
He found Strott鈥檚 Facebook page a few years ago. 鈥淓verytime I have a panic attack about my health, I text him,鈥� he said.
Lee Hall of Clyde, N.C., found out about the charity after her son passed away. She went to the fundraiser for the second year to support the effort, which this year raised nearly $22,000. Her son, John Michael Hall, was diagnosed at 14. He died in October 2023 at the age of 26 after an unattended fall, Hall said. She wishes he had had the opportunity to meet Strott.
鈥淗e was diagnosed at 14. We saw six different surgeons. It鈥檚 such a risky surgery; none of them were willing to do it. They said to wait till he gets through puberty and it should stop, but it never did.鈥�
A talented athlete, Hall said it was suggested that he wait and have fusion surgery, probably by the age of 30. 鈥淏ut my son was such a driven kid, he thought, 鈥業 just want to have it now and I鈥檒l get through it.鈥� He didn鈥檛 know how bad it was going to be. He made it through the surgery, but he was never the same.鈥�
鈥淚t鈥檚 such a rare thing. The people who do the research, the funding, it鈥檚 very much needed. It鈥檚 very debilitating,鈥� said Hall.
For years, Phillips said, she didn鈥檛 tell anyone she had the disease. 鈥淚 think only my mom knew.鈥� But, now, 鈥淭he more I talk with people, the more I鈥檝e seen this a very shared experience, the more this is a real issue and there鈥檚 very little research out there and very little understanding of the disease,鈥� Phillips said. 鈥淭hat鈥檚 really my push for this film and hope for this film, to keep spreading awareness and to really show what each person is going through. I know every person鈥檚 journey is different.鈥�
Phillips鈥� documentary will follow four people with Scheuermann鈥檚. She and her film crew spent three days in Pittsburgh with Strott and followed him to the International Spine Study Group鈥檚 annual conference in Las Vegas. There, Phillips鈥� team filmed Strott鈥檚 presentation on the charity鈥檚 joint Scheuermann鈥檚 advocacy efforts with the ISSG as well as interviewing ISSG Founder/President Dr. Shay Bess and adult spinal deformity surgeon Dr. Alan Daniels, the Chief of Spine for the Orthopedic Department at The Miriam Hospital and Rhode Island Hospital. Both are members of the Scheuermann鈥檚 Disease Fund Medical Advisory Board.
Her plan is to submit the film to some of the top film festivals for 2025-26 as early as February. 鈥淲e will look for distribution through the festival circuit,鈥� she said and is hoping for a wider release. The working title for the film is 鈥淭he Hunchback.鈥�
Phillips said she received approval for fiscal sponsorship by the International Documentary Association, making contributions tax-deductible. She has launched crowdfunding efforts and will apply for additional grants to complete the film. Updates will be posted on the SDF Facebook site.
鈥淓ven if it鈥檚 a generation after me, I feel there will be better treatment,鈥� Phillips said. 鈥淒oug has changed the game for us,鈥� she said. 鈥淲ithout him, none of this would be here, pointing people toward resources, educating people. Without doubt there wouldn鈥檛 be any moving forward.鈥�
The Scheuermann鈥檚 Disease Fund can be found at https://www.sdfund1.org/.