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Creating support network for girls with scoliosis

Abby became a patient at Shriners Hospitals for Children — Portland in early 2018 when she and her family met with Michelle Welborn, M.D. “Having Dr. Welborn as Abby’s doctor felt like it was meant to be,” said Christine, Abby’s mother. “Not only does she know how to work with kids, but she’s also brilliant – she’s a rare combination!” Over the years, Abby has built relationships with many staff members throughout the hospital, including in physical therapy and in Pediatric Orthotic and Prosthetic Services (POPS) – Northwest, LLC, where Abby gets her customized scoliosis orthotic braces. “We love Shriners and, when given the choice, I would love for people to choose Shriners,” said Christine.

As 10-year-old Abby received treatment at Shriners Hospitals for Children — Portland for scoliosis, she craved a connection with other girls her age who were experiencing the same thing. Christine did some research and found a support group. But upon attending one of the meetings, they realized that the group was geared more toward teenagers. “Abby was 10 years old at the time, and these girls were talking about puberty and going through a different stage of life. It just wasn’t the best fit,” said Christine.

Realizing that there was an unmet need in scoliosis support groups for pre-teen girls, Christine posted flyers throughout her community to gauge interest from other moms. Christine and Abby didn’t receive a single response from the flyers. Unwilling to give up, Christine turned to Facebook in April of 2018. She created a private group with a goal of providing a platform for young girls to share their experiences with scoliosis and meet people who could completely understand each other’s medical journeys. To make the group accessible to as many families as possible, Christine designated the page as "international." “I was expecting five people to join the group,” said Christine. Today, the group has 440 members.

“Abby and her mom have had a very positive attitude toward a difficult situation,” said Todd, certified orthotist prosthetist at Shriners Hospitals for Children — Portland. “It’s always important to find a way to decrease the sense of stress and isolation that young patients may be experiencing with any diagnosis, and this group is a creative solution for that.”

As an online platform, Christine has taken measures to ensure the safety of each Facebook group member. Each child’s parent is involved in the group, and they have to be vetted and admitted before officially becoming a member. The group, titled Scoliosis Support Group Girls Aged 8-12, has done wonders for Abby. Members of the group include girls from countries around the world, including Australia, Canada, Africa and Europe – all of whom relate to each other in their scoliosis diagnoses. Abby has built strong friendships with girls in Texas, New Jersey and Missouri, and she has even traveled to meet one of the girls in person when their mothers arranged it. The visit cemented the friendship between the two girls that much more.

“The Facebook group is really fun because I can talk to a bunch of girls who understand scoliosis and can help me cope with it,” said Abby, now 12. “I made a bunch of new friends through the group! When my friend had to get back surgery, we all helped her and supported her and I answered her questions about anesthesia. When I had to get surgery, the others helped encourage me.”

While shopping together during their trip, the two friends discovered T-shirts that read "Girls Can Do Anything." Of course, it was a necessary purchase! “'Girls Can Do Anything' is on the shirts that we bought on our trip for our friends. Now, it’s our group shirt. We all wear it when one of us goes into the hospital for X-rays or other scary appointments. We all have matching bandanas, too!”

Through the care that Abby has received at the Portland Shriners Hospital, as well as the friendships she has made through the Facebook group, Abby has found the confidence, courage and support she needed to navigate her condition. When asked if she had any advice for other girls who are diagnosed with scoliosis, Abby said, “You can get through it!”


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