Social media influencer Grace Tutty is the voice behind this year’s Scoliosis Awareness Month campaign from the charity Scoliosis Support and Research. Boasting 1.77 million followers across multiple platforms, the 23-year-old realised she could now be the role model she needed when she got a life-changing diagnosis at the age of 12.
She shared with Reach: “My posture was quite bad when I was around 10 or 11, and mum thought it was because I was on my iPad too much. So we went to the GP and they had a look at my back.”
Grace was diagnosed with scoliosis and given a spinal brace. This hefty piece of hard plastic encases the torso and tries to reverse the curvature of the spine caused by scoliosis.
After a year of wearing the brace, an x-ray showed it was not working and she would need a spinal fusion – an intense surgery that straightens the spine manually and implants metal rods, screws and pins into vertebrae to keep it in place.
Unfortunately for Grace, she is one of the very rare cases that had to have this surgery not once but twice and return to a brace too. If she was diagnosed just a bit earlier, she may have been eligible for a new non-invasive treatment that could have avoided all of this.
This is partly the reason she’s backing this year’s awareness campaign, focused on early diagnosis. She said: “Now, when I look back at old videos of me like on holiday, I can see that my back was curved. My parents had no idea what scoliosis was, but if they had seen a poster with this on, then maybe I would have been diagnosed earlier.”
It takes just four simple checks known as the ABCD of scoliosis:
- Asymmetry – Uneven shoulders, hips or waist
- Bend forward – Scoliosis often causes the ribs to bulge which can be seen with the naked eye when bending over like you’re trying to touch your toes
- Check for curve – Scoliosis causes the spine to curve in either ‘C’ or ‘S’ shapes, which can be verified by a professional
- Diagnosis – This is confirmed by a specialist x-ray
Grace said: “Anyone can be diagnosed with this condition, if you’ve got other health conditions you can still have scoliosis. So just check literally every child you know in your life.”
Looking back at her own journey, the influencer recalled after a full year of wearing her spinal brace: “They said I would need to have surgery. I had just turned 14. They were hoping to just put it in the top part of my spine because obviously the more metal work you have, the less movement you have.
“I was woken up at like 6am. to go (for the surgery), and you have to sign all these forms to say you consent to all the things that could go wrong. And I remember just all these men in suits coming around me in my pyjamas and I’m just like ‘What’s my signature?’”
This intense surgery meant Grace also missed a lot of year nine, but was too embarrassed about her condition to say anything: “When I went off school for weeks, I just told everyone I had a cold and I came back two inches taller.”
She recovered from the surgery completely and a year later had a check up x-ray which revealed devastating news: “They realized that the curve had then moved to the bottom of my spine. The doctor said it had only happened once in his career.”
So Grace, now 15, returned to the operating table just before her GCSEs to have all of the old metal work taken out and a new, longer fusion placed that essentially made her entire spine into one solid structure. To make the brutal situation even more full circle, after the second surgery Grace even had to wear a back brace again to recover.
She said: “That was the worst news because I knew how hard the surgery was, I knew what to expect. I was in the same ward, I was actually in the bed next to the one I’d been in. I knew how bad having a brace was. I was going through all that trauma again.”
Although she never told anyone at school about the condition when she was going through the worst of it, at 23 Grace is now a scoliosis advocate online. Even showing her scars and curves on red carpets in the hopes that she can help others get more comfortable with their own.
But that wasn’t what she initially set out to do on social media: “I was posting other stuff and there was one video I posted back in 2020 about my scoliosis on TikTok and I had so many comments of people saying; ‘I can’t believe you have this too!’. Then I realized like I should actually post about this because it’s something that I wish I would have had when I was younger.
“I was in Whole Foods the other day and this girl came up to me, and she said; ‘I’m in London getting my brace adjusted today. I love your videos and they really help me.’ It really made me happy because I remember I used to have to go to Central London to have my brace adjusted.”
But scoliosis references online are not always positive, as Grace’s other content sometimes attracts trolls: “If I have a fashion video going viral, people are like; ‘She looks like she’s got scoliosis’, trying to use it as an insult.”
Grace assured this is far from enough to stop her posting: “I post about scoliosis, but I also just share my life and other things. I feel like it’s nice to see someone that’s not defined by scoliosis and is living a normal life and has a career. You can still go on to be something else other than just ‘that girl that was ill’.”
