I am titanium: FIVE THINGS YOU DIDN'T KNOW ABOUT SCOLIOSIS
Some of you might remember that I wrote, a few months ago, about my experiences becoming bionic.
Okay, that may be romanticising it a little bit. But I do, in a way, have an artificial back. It is held together with two titanium rods, fourteen 2.5cm-long screws and a number of hooks. And all because of this possibly-genetic spinal condition I have, called scoliosis.
I go into more detail about my personal experience with scoliosis here. That's my spine in the picture. But, in a way, I feel I only scratched the surface with that last post. My experience by no means reflects the experience of every other scoliosis warrior out there. And just because June – Scoliosis Awareness Month – has passed, doesn’t mean that all talk of the condition should now be packed into a box, ready for next year. Scoliosis affects my life, every minute of every hour of every day, 24/7. So I’m bringing it back to Katherine’s Corner for round two, with five things you probably didn’t – but should – know about scoliosis.
1. Scoliosis is not always found on its own.
It can be part of other conditions. For example, according to Nationwide Children’s, scoliosis is found in around fifty percent of people with spina bifida. It is also a recognised symptom of the Ehlers-Danlos syndromes, a group of connective tissue disorders, according to the NHS website. If you have scoliosis, it’s worth keeping an eye out for other symptoms too, although it can be difficult to know what symptoms are caused by the scoliosis, and what are caused by other conditions.
2. It can have a profound psychological impact.
Most people tend to only think about the physical impacts of scoliosis. The impaired breathing, the rib humps, the uneven hips and arms and shoulders, etcetera. What many people don’t understand is the psychological impact. The fear of paralysing yourself if you fall the wrong way. The low self-esteem that can come with being ‘different’. Not being able to wear certain things in case they show your back brace. (I will do another blog post on back braces another time.)
And just how depressing it is in the run-up to surgery. My surgery was at the start of summer, and I envied my friends for being able to make plans and look forward to the summer. Whenever I thought about the summer, I had a massive barrier in the way. Like a mental block, because I didn’t know if I’d be in a fit state to even enjoy the summer.
It can also be very isolating. Like I’ve said before, scoliosis isn’t talked about enough. When I was diagnosed six years ago, I was the only person I knew with the condition. But then when I started telling people, I was surprised at how many other people had it, or knew someone with it. I was lucky enough to become part of a lovely online community on Instagram. I’m still friends with some of them today. Without them, I’d have found the experience ten times tougher.
3. Several celebrities also have scoliosis!
Time for a little list-within-a-list. Don’t say I don’t treat you right.
3a. Usain Bolt
Probably the most surprising one I found while researching. Yes, Olympic runner and all-around super-fit athlete Usain Bolt also has scoliosis! His curve is over 40 degrees, which – to give you an idea of how severe that is – would make him eligible for spinal fusion surgery, in the UK at least. Nonetheless, he has still managed to have an incredible career in sports. He is proof that scoliosis does not automatically mean you can’t play sports or be an accomplished athlete.
3b. Mary Berry
Yes, you heard that right. Dame Mary Berry, celebrity food writer, chef, television personality and baker, has scoliosis. Hers came from having polio as a teenager in the late 1940s, leaving her with a weaker left side and a twisted spine, according to her autobiography.
3c. Princess Eugenie of York
Currently 12th in line to the British throne, Princess Eugenie had spinal fusion aged 12 to correct her scoliosis. When she got married sixteen years later in 2018, she chose a backless wedding dress to show off the scar. (I did something similar with my prom dress when I was fifteen.)
3d. Jessica Kellgren-Fozard
YouTuber and television personality Jessica Kellgren-Fozard also suffers from scoliosis! She creates online content about that and her other disabilities, as well as being a lesbian, wearing vintage clothing, and being a disabled parent. Quite frankly she is one of my biggest inspirations. But now is not the time for a fangirl moment.
3e. Elizabeth Taylor
Late actress Elizabeth Taylor suffered with chronic back pain throughout her life. Some of this came from scoliosis, an S-shaped curve with which she was born. In her later years, her chronic pain confined her to a wheelchair.
4. Spinal fusion surgery is not the only option for some.
It was the only option I was offered due to my age and the severity of my curve, but for some there are other options.
Take Vertebral Body Tethering (VBT), for example. VBT is a surgery in which screws are put into the spine through the ribs – so the scar is at the side rather than the back – but rather than being connected by metal rods, they are connected by a flexible cord. Rather than holding the spine straight, it aims to compress one side of the spine to make it grow the other way. According to NHS England, it is only effective in children with a lot of growth left, under the age of eight. As of 2019, the NHS does not feel it would be beneficial to offer the surgery, but it is available in America. Julia Carlile, a dancer who featured with her group Mersey Girls on Britain’s Got Talent in 2017, had VBT done in America, in order to keep her spine flexible so she could continue her dancing career.
5. NO, I DO NOT BEEP AT AIRPORT SCANNERS
This is the question I get asked the most. Whenever I tell people I have a titanium spine, that nearly always is the first thing that comes to mind. You’d think I would beep when I go through the metal detectors at airports, but I actually don’t! They just don’t detect my metalwork. I do always bring a doctor’s note with me just in case, but last time I went on a plane, the only thing that beeped was my trainers…!
I hope this blog post has proved educational. Scoliosis is very little-known and very misunderstood in my experience. If just one person has learnt something new today, that is enough for me.
Disclaimer: I am not, and have never claimed to be, a medical professional. If in doubt, seek medical advice.