Newtown Girl Scout launches scoliosis Instagram account

Anna von Hohen is on a mission.

The 15-year-old Newtown resident is spreading the word about scoliosis.

Her recent Girl Scout Gold Award project is an Instagram account called “Beating the Bend” where she provides support, education and awareness about scoliosis. The account can be found at @beatingthebend and is attracting new followers.

Scoliosis is an abnormal side-to-side curvature of the spine. It can occur at any age, but is most commonly diagnosed in adolescence.

Von Hoben was diagnosed with scoliosis at age 12.  “At first I was a little bit scared,” she said. “I didn’t know what it was, I didn’t know what I had to deal with. I didn’t know if it could get worse, what would happen if it got worse. I had so many questions.”

This reaction was one of the reasons she wanted to spread information and support. “I wanted other people who have this diagnosis to have the tools to cope and be successful,” she said.  “This Girl Scout project was very personal for me.”

Her previous project, which earned her a Silver Award, was a pollinator garden at Washington Crossing Historic Park. The self-sustaining garden teaches about pollinators and what they do. “We had a live event there, and we gave people materials to build their own pollinator gardens,” she said. “It was really fun, but for my Gold Award I wanted to do something bigger and more focused on something for myself.”

One thing von Hohen likes about the project is its sustainability. “Right now I’m focusing on kids my age with scoliosis, but as I get older, I think I’ll be able to continue to reach out to people my age with this diagnosis,” she said.  

“Starting the Instagram (account) was important to me because it’s getting the message out there. There are other accounts out there that deal specifically with scoliosis, but my goal was to use my account to put out different ideas than what they are doing.

“Right now, I’m more focused on people my own age, although people who are older or even people who have never heard of scoliosis can benefit from it.”

 Her posts vary. Some are informative, such as the “word of the week,” where she chooses a scoliosis term and defines it. Some are encouraging. “Cool people have scoliosis” and “spine positivity” are some taglines she has posted to keep spirits up.

“I just want people to not give up,” she said. “I think a lot of people do give up because they get frustrated, but when you stop, nothing else is going to happen. You have to have persistence to get through it.”

She believes early diagnosis and treatment make a difference. “Treating it early 100 percent matters,” she said. “I think if I had done something a year before I actually had it looked at, mine wouldn’t have been as bad as it is, and mine is on the mild side. But it wouldn’t have taken me as long as it did to get to where I am now.”

She realizes others were not as lucky. “I have a friend whose doctors kept telling her to wait and not do anything, and eventually it got so bad she had to have surgery,” von Hohen said. “She was a cheerleader so it really impacted her life. So many people with scoliosis have had that happen, where doctors told them to wait and it ended up being too late.

“The number one thing I have to say about scoliosis is to get treatment as soon as possible. I did that, and it made a difference for me, so I want other people to have that opportunity as well.”

Early treatment was important to von Hohen, who was and continues to be a dancer. “Dance is a huge part of my life, and I’m still able to do it,” she said. “At first, doing my prescribed exercises was really difficult, but now I just do them without thinking. It’s simple things like how I sit, or how I pick things up.

“I’ve really tried to do everything possible to minimize the impact that scoliosis has on my life and I want to share that journey with others.”

Like many people with scoliosis, von Hohen wears a back brace. “At first I was really uncomfortable with it, but now I don’t even think about it,” she said.

The brace was custom made for her. “You can get one on Amazon but of course they’re not very good,” said Jaclyn von Hohen, Anna’s mother. “Unfortunately, they’re expensive, and we had to pay out of pocket. I think it’s horrible that people who can’t afford it just have to suffer because so much isn’t covered by insurance.”

The initial diagnosis was covered by insurance, but subsequent treatment was not.

“It’s a horrible situation for families who can’t afford the right care,” Jaclyn said. “We were lucky to be able to do all the right things to help Anna, but I really feel for parents who have to make the decision to either go bankrupt or watch their kids suffer.

“That’s why getting this information out there is so important, and I’m so proud of Anna for doing all of this. She is trying to help others with her diagnosis, and hopefully people will notice and things will change for the better.”  

For Anna, that is the entire goal. She said,“I want everyone with scoliosis to live the best lives they can.”