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无毛视频檚 Disease Fund无毛视频檚 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无毛视频檚, which affects between 2 and 8% of the population, 无毛视频渁fter having really bad low back pain that wouldn无毛视频檛 go away,无毛视频� she said.
Phillips is filming the documentary to shed light on the need for further awareness and research. Until recently, she hadn无毛视频檛 met anyone else with Scheuermann无毛视频檚 disease.
无毛视频淟ooking back, everything was so nonchalant,无毛视频� Phillips said. 无毛视频淲e didn无毛视频檛 know anything about this disease. I was prescribed physical therapy. We asked for a brace at some point, but it was always, 无毛视频楴o, it doesn无毛视频檛 work.'无毛视频� She expressed regret in not having a brace. 无毛视频淚 know I would have stuck to wearing a brace because of how badly, even at a young age, I wanted it to go away.无毛视频�
Scheuermann无毛视频檚 disease (SD) is a form of kyphosis, also referred to as Scheuermann无毛视频檚 kyphosis, and is typically diagnosed in children during adolescence, and many times occurs during a growth spurt, according to Scheuermann无毛视频檚 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 无毛视频淪无毛视频� curve, with Scheuermann无毛视频檚, the person无毛视频檚 spine has an accentuated 无毛视频淐无毛视频� curve, or 无毛视频渉unchback,无毛视频� occurring in either the thoracic or the lumbar areas.
Unlike scoliosis, Scheuermann无毛视频檚 causes physiological changes to a person无毛视频檚 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无毛视频檚 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. 无毛视频淎s you age, if you don无毛视频檛 have the curvature corrected, it can cause significant damage to your spine,无毛视频� 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. 无毛视频淧arents think it无毛视频檚 been done in schools, pediatricians think it无毛视频檚 being done in schools, but most of the time it无毛视频檚 for scoliosis,无毛视频� Strott said.
Through their efforts, Strott and Phillips hope to raise awareness about the disease.
Strott, 59, created the Scheuermann无毛视频檚 Disease Fund in 2014. After five difficult and painful spinal fusion surgeries over a period of three years, his spine 无毛视频渇ailed无毛视频� 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无毛视频檚 blog. 无毛视频淲hen I was first diagnosed, there was nothing on the internet. The only information we could find was his blog. And it无毛视频檚 crazy that now, 16 years later, I无毛视频檓 filming him,无毛视频� said Phillips.
Along with the charity, Strott developed an international database of doctors who are either members of the Scheuermann无毛视频檚 Disease Fund无毛视频檚 advisory medical or research initiative or have been referred by someone with Scheuermann无毛视频檚.
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无毛视频檚 progression, 无毛视频渂ut it无毛视频檚 always been an everyday struggle,无毛视频� she said. 无毛视频淓very time I无毛视频檇 go to seek help 无毛视频� and as the years went on it would be less and less with more and more time in between 无毛视频� I无毛视频檇 hear, 无毛视频榊ou无毛视频檙e not a candidate for surgery无毛视频� because your curve needs to be 75 degrees or higher.无毛视频� 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无毛视频檚 patient无毛视频檚 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无毛视频檚 at 14.
无毛视频淔or the first 10 years the pain was pretty manageable,无毛视频� he said. But it无毛视频檚 been increasing each year. Kachinski said he无毛视频檚 been unable to work since 2023 and can无毛视频檛 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无毛视频檛 what bothers him. It无毛视频檚 the pain.
无毛视频淚 really have no choice, because of my lungs. The doctor says I无毛视频檓 at 50%. I can无毛视频檛 breathe deep and I get winded.无毛视频�
He found Strott无毛视频檚 Facebook page a few years ago. 无毛视频淓verytime I have a panic attack about my health, I text him,无毛视频� 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.
无毛视频淗e was diagnosed at 14. We saw six different surgeons. It无毛视频檚 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.无毛视频�
A talented athlete, Hall said it was suggested that he wait and have fusion surgery, probably by the age of 30. 无毛视频淏ut my son was such a driven kid, he thought, 无毛视频業 just want to have it now and I无毛视频檒l get through it.无毛视频� He didn无毛视频檛 know how bad it was going to be. He made it through the surgery, but he was never the same.无毛视频�
无毛视频淚t无毛视频檚 such a rare thing. The people who do the research, the funding, it无毛视频檚 very much needed. It无毛视频檚 very debilitating,无毛视频� said Hall.
For years, Phillips said, she didn无毛视频檛 tell anyone she had the disease. 无毛视频淚 think only my mom knew.无毛视频� But, now, 无毛视频淭he more I talk with people, the more I无毛视频檝e seen this a very shared experience, the more this is a real issue and there无毛视频檚 very little research out there and very little understanding of the disease,无毛视频� Phillips said. 无毛视频淭hat无毛视频檚 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无毛视频檚 journey is different.无毛视频�
Phillips无毛视频� documentary will follow four people with Scheuermann无毛视频檚. She and her film crew spent three days in Pittsburgh with Strott and followed him to the International Spine Study Group无毛视频檚 annual conference in Las Vegas. There, Phillips无毛视频� team filmed Strott无毛视频檚 presentation on the charity无毛视频檚 joint Scheuermann无毛视频檚 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无毛视频檚 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. 无毛视频淲e will look for distribution through the festival circuit,无毛视频� she said and is hoping for a wider release. The working title for the film is 无毛视频淭he Hunchback.无毛视频�
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.
无毛视频淓ven if it无毛视频檚 a generation after me, I feel there will be better treatment,无毛视频� Phillips said. 无毛视频淒oug has changed the game for us,无毛视频� she said. 无毛视频淲ithout him, none of this would be here, pointing people toward resources, educating people. Without doubt there wouldn无毛视频檛 be any moving forward.无毛视频�
The Scheuermann无毛视频檚 Disease Fund can be found at https://www.sdfund1.org/.