The Scheuermann’s Disease Fund is the first charity of its kind to help those suffering from Scheuermann’s Disease/kyphosis and its long-term secondary effects.
Living with Scheuermann's Disease
"Living with Scheuermann's Disease" Project Video created by Cinematographer Bethany Bailie (Bethnav86@gmail.com) and Doug Strott;
Song Credits: Greg Holden, "Hold Tight" (www.gregholdenonline.com, included with artist approval); Lady Antebellum, "I Was Here" (www.ladyantebellum.com)
What is Scheuermann's Disease?
Scheuermann's Disease is a spinal (skeletal) disease that typically presents itself in children during adolescence. It is often noted by an accentuated curvature, or "hunched back" and if left untreated, may lead to significant health complications later in life. Studies suggest that about 2% of the population is affected by this disease.
For the worst sufferers of Scheuermann’s Disease, the effects may include rapid acceleration of degenerative disc disease, a sedentary lifestyle as a result of radiating spinal pain, multiple surgeries to correct spinal and body deformities, debilitating lower back pain, erosive spinal osteoarthritis, significant mental stress associated with chronic pain, and severe depression and anxiety.
Scheuermann’s Disease, or Scheuermann’s Kyphosis as it is sometimes called, is believed to be caused by abnormal bone growth in the vertebrae, potentially by an interruption of blood flow. This happens most often during a growth spurt during adolescence that causes the vertebrae to change from a healthy rectangular shape to triangular wedge shapes.
The Scheuermann’s Disease Fund was created to improve the public's awareness and recognition of this spinal deformity, improve early detection in adolescents, and to work with the medical community to better understand the long-term secondary effects Scheuermann's can cause.
What makes Scheuermann's a Rare Disease?
Schuermann's disease differs from scoliosis and postural kyphosis in that it causes actual physiological changes to a person's body. These changes include:
thickening of the anterior longitudinal spinal ligament
vertebral plates (the tops and bottoms) become porous thus allowing disc material to be absorbed
decreasing disc height
forming Schmorl's nodes, which are often a telltale sign of SD found on radiographic imaging
a certain number of vertebrae change from the normal brick shape to a wedge shape
anterior wedging of greater than or equal to 5 degrees in 3 or more adjacent vertebral bodies
usually in the thoracic region but can also be found in the lumbar region, as well
These changes become permanent once the person's bones stop growing.
This also ends any opportunity for less invasive treatment options such as bracing and physical therapy as the only effective treatment option now becomes spinal fusion surgery for those suffering from significant pain and/or severe curvatures.
This is the reason that early detection is of utmost importance and why the charity fights for adding Kyphosis to school spinal screenings.
New Data Gathering Project for Scheuermann's Disease Research - Please Read!
The Scheuermann's Disease Fund has partnered with the Coordination of Rare Diseases at Sanford (CoRDS) to develop a questionnaire designed to collect data on the secondary health problems that patients with Scheuermann's develop over time.
The collected data will then be given to select researchers in hopes of generating the first comprehensive long-term research study on the secondary health problems affecting Scheuermann's patients as we age.
Find a Treating Doctor for Scheuermann's!
International Doctor Database
If you are like most of us with Scheuermann's Disease, you have probably had a difficult time finding a physician who is right for you. Check out our international "Doctor Database" comprised of physicians referred by patients with SD who want others to obtain the same great treatment. See if a doctor is practicing close to you!
Or, refer a physician so others can benefit from the same great treatment!
Social Media Support Groups for People Affected by Scheuermann's Disease
Some wonderful people have setup Facebook support groups that are solely dedicated to people suffering from Scheuermann's Disease and other similar spinal deformities.
Please consider joining these groups, LINKS BELOW, as the members are very knowledgeable, kind, and supportive:
Scheuermann's Disease, Kyphosis, & Kyphoscoliosis
Doug Strott - Founder, Volunteer
Doug Strott has over 25 years of experience in the financial services industry with his last job being a Regional Director for Dimensional Fund Advisors in Austin, TX. However, due to the long-lasting ancillary effects of Scheuermann’s Disease, and acute spinal arthritis, Mr. Strott's health required that he take retirement disability.
Case 2:13-cv-01245-DSC Document 44
Filed in the United States District Court for the Western District of Pennsylvania.
This is a winning case in FEDERAL US COURT that can be used as a persuasive argument with Scheuermann's Disease as the primary cause for LONG-TERM DISABILITY.