Curvy Girls is an international support group for young girls with scoliosis. Leah Stoltz from New York started the group after sitting in on a meeting of adult scoliosis sufferers and deciding that there ought to be a similar support network exclusively for under-18s. Leah very kindly agreed to answer some questions from the Scoliosis SOS team - scroll down to read the interview in full.
So, Leah - for those who may not know, what kind of support does Curvy Girls provide for scoliosis sufferers?
Curvy Girls provides peer support to young girls dealing with scoliosis. What's awesome about our meetings - and the reason our organisation is so successful - is that we're entirely teen-run. When girls hold their groups, it's only girls in the meetings, so it's a safe and comfortable environment.
What treatment(s) have you undergone for your own spinal curve?
I wore a Boston brace for two and a half years, and then had spinal fusion surgery (T5-L4).
Were you pleased with the results?
I was very pleased with the outcome of my surgery and I try to talk about it as much as possible. Something I've noticed a lot is that you really only hear (and see on social media) scary or worrisome stories of surgeries not going well. For the innumerable number of cases that go well, they don't necessarily need to talk about it as much because it was easier to manage. That's one of the reasons I try to talk about my story so much: to make surgery less scary for those who are about to undergo it.
You live in the USA - how challenging is it to access effective scoliosis treatment in America today?
I grew up and still reside in New York, so for me it was very easy to get access to bracing and surgery, as well as to surgeons who specialise in scoliosis. On the other hand, curvy girls who live in more remote areas of the US might have to travel great distances to receive care.
When doing research for our book, Straight Talk with the Curvy Girls
, we found out that Europe is way ahead of the US when it comes to conservative care - scoliosis-specific exercises and 3D bracing. In 2012, there was only one place in the whole of the US that offered this treatment, and for most of us it was hours away by plane. I am proud to say that, through the advocacy of Curvy Girls, families in the US now have greater access to these conservative care options.
What is the single most important piece of advice you'd give a young person who's just been diagnosed with scoliosis?
Talk about how you're feeling! Don't keep it bundled inside. Find support - a trusted friend, a parent, a Curvy Girl. Curvy Girls has support groups all over the world, as well as an online forum, Instagram page, Facebook group, book...there are so many ways to feel supported and to talk with other girls who are going through what you are going through (or who have already been through the same things).
For the benefit of the friends and families of scoliosis sufferers, could you shine a little bit of light on the thoughts and emotions of someone who's going through scoliosis?
A scoliosis diagnosis is something that just happens to us; we feel like we don't have control over it, and sometimes it can feel like there's no end in sight. We're told to wear the brace, which is a very passive activity, and on top of that we're not even sure it will definitely help! And then sometimes we're told to wear the brace under the threat of surgery, which is a terrifying idea. I wasn't fortunate enough to know about the Schroth method
prior to my surgery, but what I love about it is that it gives us a bit more control over a situation that can feel like it's out of our hands.
We understand you're looking for a new UK representative - what does this role entail, and what sort of person are you looking for?
Yes we are! The best Curvy Girls leader is one who has the desire to help others as well as themselves. She should not only want to give support, but be open to asking for and receiving it when she needs it as well. Girls with scoliosis between the ages of 11 and 18 are eligible. We provide all the support necessary to become a CG leader. If you're open to learning, we're open to teaching! Application details here.
What's next for Curvy Girls? What are the Foundation's aims for the future?
World domination! In all seriousness, we just want to make sure there's support for girls wherever they are. My personal goal is that support should be offered in tandem with any diagnosis, brace, or surgery consultation. It's easy to just focus on treating the physical symptoms of scoliosis, but there's also an emotional component that's far too frequently ignored. Curvy Girls is the emotional brace for scoliosis!
Visit www.curvygirlsscoliosis.com for more information about the Curvy Girls Scoliosis Foundation, or click here to learn about the exercise-based scoliosis treatment courses we provide here at the Scoliosis SOS Clinic in London, England.