Pharos-Tribune

June 18, 2013

Logan teen starts scoliosis support group

Logansport teen starts scoliosis support group

BY MITCHELL KIRK PHAROS-TRIBUNE
Pharos-Tribune

---- — There’s an old phrase that states, “Real women have curves.” And while this Logansport teen has the kind of curves she’s working to get rid of, she’s trying to offer support to other teen girls going through the same thing.

Fourteen-year-old Madison “Madi” Looker was diagnosed with scoliosis at the age of 12. Feeling confused and alone, a quick Internet search not only gave her an outlet to find support for herself, but a way to provide it to other teen girls with scoliosis across the state as well.

In January 2011, after experiencing pain on her back, Looker recalled her mother noticing two large lumps on her spine.

Following X-rays confirming it was scoliosis, Looker started treatment at Riley Hospital for Children in Indianapolis, where she would spend the next two years returning regularly to get fitted for back braces.

”From then on it went pretty fast,” Looker said of the initial diagnosis. “That day when I went to Indianapolis, [the doctor] told me we were going to have to do a brace to keep my scoliosis under control. That day was pretty rough.”

Through a regimen dictated by her doctor, Looker gradually worked up the time spent in her brace until she was wearing it 22 hours a day. This had an impact on her participation in volleyball and softball and even forced her to sit out of some softball games during the summer. She would also grow out of her braces and have to get refitted for new ones as time went on.

In June of last year, she was told not only was her back not slowly becoming straighter as expected, but that the curves in her spine were actually getting worse.

Even with the support of her family and friends, Looker said the disorder proving to be ever more difficult to manage put her in a lonely state.

”I kind of felt alone because I didn’t know anyone else who had it,” she said. “I didn’t know how to deal with it. I kind of just shut out the world.”

Dr. Beverly Ahoni, a pediatrician at Logansport Memorial Hospital, said because teens often feel self-conscious as it is, a disorder like scoliosis can often intensify these feelings and that support groups would likely aid in overcoming it.

“Whether it’s pain or the way you look, I think it’s always comforting to have someone else to kind of bond with,” Ahoni said. “In their teen years, I think they always feel more self-conscious than usual, so to know other teens are going through it I think is helpful.”

Last September an Internet search led Looker to Curvy Girls — a support group with chapters all over the country for teen girls with scoliosis started by Leah Stoltz of Long Island, N.Y., in 2006 when she was 13.

”That’s when I knew I wasn’t alone and there were other girls going through the same thing,” Looker said, adding she regularly posts words of encouragement on the organization’s website’s message boards.

Looker went on to say she essentially started her own Indiana chapter the night she found Curvy Girls, after discovering the ones closest to her in Michigan, Ohio and Kentucky would still be too far for her to attend on a regular basis.

”No matter where we live, we all feel the same way — alone in our struggle with scoliosis,” wrote Stoltz in an email. “But with Curvy Leaders like Madi, teens with scoliosis have someone they can talk to who understands. Madi is making a difference one girl at a time.”

Looker attended an event that raises money for scoliosis called Color the Curve 5K in Chatanooga, Tenn., earlier this month, where she met leaders of Curvy Girls chapters in Tennessee, Kentucky and Virginia, increasing the support she began finding on the organization’s website.

”It was a lot of fun because color runs are fun,” Looker said, describing the event that includes throwing packets of dyed cornstarch into the air to cover the crowd with colors, “but it was a lot more fun actually getting to talk to the people who actually have scoliosis.”

Looker said she bonded with the girls over things she didn’t have in common with her other friends, like how irritating it is when the metal on their braces would catch on something and rip a hole in a shirt and trading jokes about which parent puts on their braces the tightest. Suddenly she wasn’t so alone.

”I think she has been very dedicated to her treatment as far as wearing her brace as many hours as she has to,” said Looker’s mother, Julee. “I think when she found the Curvy Girls, she was really excited to be a part of that support group and in addition be supportive of others in the area.”

While the Curvy Girls Indiana chapter is still in its planning stages before it holds its first official meeting, Looker said she has already corresponded with two girls interested in joining, one from Logansport and another from Fort Wayne.

Looker said the meetings will address topics like advice on how to adjust your brace when it’s uncomfortable and provide encouragement and support for girls who may be getting ready to have surgery.

Looker is happy to say her latest brace is improving her spine to the point where she only has to wear it 10 hours a day, a number that will decrease in the future until she won’t have to wear it at all.

Even after she’s through with the brace, that won’t stop her from being involved with the support group, she said.

”Afterward, since I’m a leader for it and since there aren’t many people I have for my group yet, I think it’s important to stay as a leader to help other girls who have braces and may have to have surgery,” she said.

Learn more: To find out more about the Indiana chapter of Curvy Girls, contact Madison "Madi" Looker at curvygirlsindiana@gmail.com or visit curvygirlsscoliosis.com.