Shriners Children’s Spokane Patient Inspires Scoliosis Support Group

Patients at Shriners Children’s Spokane can expect wrap-around care throughout their scoliosis journey.

And thanks to a teen patient, girls now have extra support for understanding and navigating their scoliosis diagnoses.

Claire has been a patient at Shriners Children's Spokane since her 13th birthday. It was during a visit to her grandparents' house, while learning to dive, that her mother noticed something was amiss. Claire’s shoulder popped out at an odd angle. Concerned, her parents immediately scheduled an appointment at Shriners Children’s Spokane to see the region's pediatric spine specialists.

Doctors confirmed the presence of scoliosis through the help of imaging. They learned that the primary age of onset for scoliosis is 10-15 years old, and girls are eight times more likely than boys to develop a curve. The medical staff advised Claire and her parents that she would need spinal fusion surgery in the upcoming months to correct the curve in her spine. The diagnosis was a bit scary for Claire and came as she navigated a new middle school. Luckily, she met a girl there who had recently undergone the same surgery. This newfound friend became Claire's guiding light, providing invaluable advice and support, leading her through the unknown.

Taking a few months off from school, Claire had her surgery, led by Shriners Children's Spokane pediatric orthopedic surgeon, Bryan Tompkins, M.D. The fusion procedure was a success, allowing her to participate in all her favorite activities. Shriners Children’s Spokane pediatric orthopedic surgeons perform an average of 70-75 spinal surgeries every year! After a period of recovery, Claire returned to school, playing tennis and engaging in physical education classes with newfound confidence.

With renewed excitement about her regained health, Claire began pondering the experiences of other patients facing scoliosis. She wondered if other patients felt isolated and alone in their diagnoses. She realized other girls might also be looking for the type of peer support she had been fortunate to receive.

She discussed the idea of starting a support group with her physical therapists at Shriners Children’s Spokane. She recognized the need for a safe space where girls could discuss their feelings and develop healthier relationships with their diagnoses.

Claire's vision came to life as she initiated a Scoliosis Support Group for Girls at Shriners Children’s Spokane. The meetings initially took place over Zoom, creating an environment where the girls could comfortably share their scoliosis-related issues. Claire meticulously planned and executed the first meeting, ensuring it met the approval of specialists. The group's motto emphasized support and respect for all who joined. Claire began each meeting by encouraging everyone to share a positive and negative experience from their week, or discuss something they were currently working on.

In 2022, the group had its first in-person meeting. Patients continued learning from one another, regardless of where they were in their scoliosis treatment. Together, they addressed various topics, such as finding comfort in braces, suitable ice packs, and clothing choices that accommodated their condition.

Hearing stories from other scoliosis patients brought a sense of belonging and understanding, and helped answer questions and alleviate some of their fears. The support group has become an invaluable resource for Claire and her peers. They offer a compassionate ear, providing comfort through shared experiences. Simply being present in the group allows them to uncover any concerns or anxiety about their condition.

Through Claire's initiative, other girls have found solace, understanding, and a community in the support group. Claire's determination has empowered others to embrace their scoliosis journeys with courage and hope.

The Scoliosis Support Group for Girls meets on the second Wednesday of each month at Shriners Children’s Spokane. In-person meetings are paused during the summer break and will reconvene at the start of the new school year. If you would like more information, please contact Zoie Patch via email at zoie.patch@shrinenet.org or call 509-744-1244.