Standing up strong for scoliosis

Sara Cochran thought life was going smoothly until, as a student at Leonardtown Middle School five years ago, she was told she had a debilitating curve in her spine.

Emily Clark, left, 17, of Leonardtown, Sara Cochran, 18, of Leonardtown and Gabby Mesmer, 14, of Hollywood, are members of the Curvy Girls of Southern Maryland support group.

She discovered online a support group for girls with scoliosis — the medical condition she was told she had. The group was based in another state, so Cochran and a friend decided to start their own group to develop a network of support locally.

The Curvy Girls of Southern Maryland scoliosis support group allows girls to share challenges associated with scoliosis treatment, update each other on their own progress and, well, have “girl talk.”

People with scoliosis, most frequently females, have an abnormal curve of the spine. It is typically caused by anomalies present at birth.

Conventional treatment for scoliosis is through braces and/or surgery.

Members of the Curvy Girls each have their own challenges and treatments. Some wear braces nearly every hour of every day, while others only wear them at night or a couple hours a day.

“You don’t always need treatment,” depending on the severity of the spinal curve, Cochran said.

By meeting others at different points of the treatment process and hearing encouragement from their peers, the girls can feel empowered, she said.

Some members, like Emily Clark, have gotten to the point where they no longer need to wear a brace. Some have had surgery to mostly correct the spinal curve.

Clark, a junior at Leonardtown High, was diagnosed when she was in second grade. She first wore a brace in middle school.

“Now I’m out of my brace, and everything is back to ‘normalish,’” she said.

 

She’s a cheerleader at the school, and no longer needs the brace now that she’s basically reached the peak of her growth, she said.

 

“Growth spurts tend to make the curve grow,” she said, adding that for every 2 inches of growth a person often needs to get a new brace.

Clark said she was told people with scoliosis can play any sports, as long as they are not full-contact, like football or lacrosse.

Cochran and Anna Staats, a sophomore at Great Mills High School, organized the Southern Maryland chapter of Curvy Girls Scoliosis Support Group in November 2010, just before Cochran underwent surgery to help correct the curve in her spine.

“That was so exciting,” she said of the group’s first meeting.

Cochran, then 13, had been diagnosed with the condition about a year and a half earlier, and had been wearing a back brace for about a year. She discovered the support group online and had found it helpful to hear others’ stories.

She decided to start the local group after hearing about other girls who had scoliosis so they could comfort each other and stem feelings of loneliness.

Now 18, Cochran is planning to go away to college soon.

“I’m hoping to pass over the leadership role to one of the other girls” so the group will continue in Southern Maryland, she said.

The group usually meets once a month at Cochran’s home in Leonardtown. While the girls — usually a half dozen or so of them — hold an official meeting, their parents also hang out and talk.

“It’s very important to have a positive outlook on scoliosis, your situation and your life,” Cochran said. “My story is my story, and if it can offer support for someone, well, that’s why I share it.”

Gabby Mesmer, an eighth-grader at Leonardtown Middle School, underwent surgery for scoliosis in November. She had to miss several weeks of school during recovery, but is back up and feeling fine now, she said.

She didn’t know much about the condition when she was first diagnosed in sixth grade, although a friend from school also had been diagnosed and told her about the support group.

Since attending the meetings, Mesmer said she’s learned that she’s not alone with her condition, and has found an outlet to talk about scoliosis.

There are girls from about fifth grade and older in the group, including kids from St. Mary’s, Calvert and Charles counties.

Curvy Girls is an international network of peer-led, teen support groups that meet in person and via social media and email. Chapters have spread throughout the United States, Canada, South America, Europe, Great Britain and Australia.

The organization was started by Leah Stoltz of Long Island, N.Y., to bring together girls with of scoliosis for encouragement.

Cochran met Stoltz several ago in Washington, D.C., to talk about the venture.

“Sara reminds me of me,” Stoltz said in a 2010 statement in The Enterprise. “She wants to talk to others going through this and help them not feel alone. I am so excited that Sara brings to Maryland what I started four years ago in another part of the country.”

Through the national organization, the girls have discovered that others with the condition may not have the access to medical treatment available here.

They launched a fundraising effort with a goal of raising $5,000 for Victoria, a 14-year-old girl from Ghana who needs spinal fusion surgery to correct her scoliosis.

The group held a couple of small fundraisers already, and Clark is organizing a 5K race later this summer to raise awareness and funds.

The total cost of surgery could top $20,000, Cochran said.

 

“It can change your life for the better,” said Cochran, who had surgery on her back when she was in eighth grade.

And, she said, just being able to talk to a group of friends who are going through a similar situation can have a positive impact, too.

jyeatman@somdnews.com

Source:  somdnews, 25th Feb 2015