Leah Stoltz stands in her bedroom, peering at herself in the mirror.
Her eyes dart up and down her body as she adjusts her protruding shirt.
She angrily pushes and pulls the fabric in all positions but nothing can hide it.
Nothing can hide the brace.
Stoltz, 25, was diagnosed with Adolescent Idiopathic Scoliosis at 14.
AIS is a condition where the spine curves and bends sideways, rotating along its vertical axis. It affects children between the ages of 10 and 18 and is found in four in 100 adolescents.
A brace is usually given to patients to slow the progression of the curvature, with the ultimate goal of avoiding spinal fusion surgery.
A study conducted by the US National Institute of Health shows that 75 per cent of patients who wore a brace had curves that did not progress to the 50-degree threshold for surgery.
Unfortunately for Stoltz, even after “faithfully” wearing her brace for 23 hours a day for two-and-half years, she required surgery to correct the two curves growing in her back. On June 27 2006, Stoltz had two titanium rods and 22 screws affixed to her spine.
However, Stoltz found the path to recovery difficult after surgery. She believed that there was a lack of non-medical support for patients, both physically and emotionally.
This encouraged Stoltz to start a peer support group called Curvy Girls. The group’s aim is to reduce the emotional impact of the diagnosis of scoliosis for patients.
“As a teenager, it was a challenge to be able to put words to how I was feeling at times. After surgery, I had to learn a whole new normal, from tying my shoes to playing golf. The physical side took a toll on the emotional side and the recovery was very difficult,” says Stoltz.
Jessica McQueen, 23, also had spinal surgery at 14. While she was at a swimming carnival, her mother noticed how one of her shoulders was sitting much higher than the other. A general practician diagnosed her with scoliosis and she had an appointment with a specialist the next week.
“It [happened] very fast! After surgery, I struggled with the fact that I was always so tired which meant I felt that I was missing out on a lot of events with friends and family, which made me feel quite down about it all,” says McQueen.
She wore a brace for 12 weeks after surgery, six weeks full time. “I hated how it was so noticeable and made me look really square. However, when I first got home after surgery, it made me feel so secure that I wouldn’t get knocked around,” says McQueen.
Fortunately, both McQueen and Stolz had support from family and friends.
“My family, particularly my Mum, was an amazing support both in the lead up to the surgery but also during recovery. My friends were also really supportive and would try and come and visit as often as they could to keep me up to date with all everything,” says McQueen.
However, Stoltz felt sometimes that wasn’t enough. “I’m not ashamed to share that I went to therapy for a few years after surgery in order to work through how I was feeling. It’s something I discuss openly in hopes of reducing the stigma behind it,” says Stoltz.
After attending an all adult group meeting, Stoltz wished they had one for teenagers her age. Despite arguments and failed attempts to hide her brace in her locker, Stoltz wanted to talk to other girls “who were going through the same thing, feeling alone, different, angry about their brace, and worried about having to have surgery”.
Her mum suggested she should start a group and at her next orthopaedic appointment, Stoltz suggested it to the doctors. They offered to send out flyers to all their “scoli” patients.
“That’s when the calls started coming in. I held our first group meeting in 2006 right before my 14th birthday with four girls—one of which was me! At our first group we talked about clothes and I brought down shirts to show how to disguise our braces by top-layering,” says Stoltz.
Curvy Girls is now an international scoliosis peer support group that has leaders in 10 different countries. They discuss concerns about telling other kids about their scoliosis, how to talk to doctors about how they are feeling and what clothes to wear with a brace.
“It’s hard to put to words how the brace made me feel, it became my shell. I was a very outgoing person and all of a sudden I had this huge secret that I was ashamed of. I didn’t want anyone to know what I was wearing it and that really weighed on me. I just felt like I had lost control of my own body.”
That is why Stoltz believes that having the support system of Curvy Girls is highly important for a patient’s emotional recovery.
“We support each other so we don’t feel alone. The reason why it’s successful because it’s a kids’ group run by a kid! We are the experts of our own bodies and we can empower each other to speak up about how we feel,” says Stoltz.
Stoltz believes that the awareness of non-medical support is improving for patients. The introduction of Schroth scoliosis exercises gives patients a chance to improve their posture, mobility and balance. “I personally am a big fan of Schroth because it gives girls more control over their diagnosis,” says Stoltz.
Spine surgeon, Dr Greg Etherington, believes that there is “no universal answer that applies to all patients” who have scoliosis.
Despite this, he believes that patients should be emotionally ready for surgery.
“The pre-surgery time is usually quite long, often years, especially if the person has had a brace. There will be multiple consultations, and lots of thinking time, especially in the public health system where patients might have to wait for two-three years for an operation,” says Dr Etherington.
Moreover, he believes that there is “too much” non-medical support for children and “very little” for adults who may be diagnosed later in life.
“The children’s hospital treats [the kids] as if they are special needs! All the patients need to do is breathe and walk,” says Etherington.
However, Stoltz thinks a method of support should be part of every diagnosis.
“My personal goal for Curvy Girls, is that every doctor who tells a girl she has scoliosis, teaches their patient about Curvy Girls as a resource for support,” says Stoltz.
Scoliosis affects patients both physically and mentally and “while the back brace is supporting our bodies, Curvy Girls is like our emotional brace. We need to help girls feel better about themselves from the inside out”, says Stoltz.
While browsing online can be helpful and accessible, Stoltz encourages patients not to believe everything they read on the internet.
“Sometimes it can only be the scary stories that are posted, because the normal stories where nothing went wrong aren’t story-making and interesting to write about. Know that for every scary story there are dozens that went perfectly fine,” says Stoltz.
She encourages patients to talk about how they are feeling and ask a ton of questions. “There are no stupid ones!” says Stoltz.
Visit curvygirlsscoliosis.com to find out more about scoliosis and events near you.