June is Scoliosis Awareness Month in the USA, and the awareness is still pretty lacking.
For something that affects 3% of the population (for perspective, that's 18,000 in Glasgow), it's not hugely well-known. I think it’s so important to support and help raise awareness of the condition as it’s been a huge part of my life since my diagnosis.
Scoliosis has become part of my normal day to day life, and it’s only when dealing with the side effects of this that I realise the impact that it can really have.
Typically identified in young people, there is no cure but can be treated effectively depending on the stage and severity. Scoliosis is a condition where the spine begins to twist and curve as an individual goes through puberty and gets progressively worse throughout their lifetime – in more drastic cases this can lead to vital organs becoming crushed and damaged if treatment isn’t sought.
In high school my Mum noticed one day that I had one hip higher than the other, she didn’t mention this at the time but I found later that she began observing my posture and picking up on other abnormalities like having one shoulder higher than the other. Over the following months I began to complain of back pain which is a little unusual for a teenage girl – part of my problem now is that I carry more weight than I should but I didn’t have this concern back then.
Upon taking me to the GP, I was asked to do the Adams Test. This is a common way for medical professionals to identify Scoliosis in young people but is not a definitive method – it involves the patient bending forward as if touching their toes in order to highlight the shape of the spine. Common in younger people, this allows any abnormalities to be monitored for changes.
There are a few things that can make Scoliosis more obvious, such as the visible curve, a lean to one side, uneven shoulders and hips and clothing being badly fitting. Having had most of these, I can confirm than having to hem one trouser leg was the worst!
Idiopathic Scoliosis is the form I have, it’s the most common form affecting 8 out of 10 cases and the cause is unknown – this means that it can’t be prevented, however it can be known to run in families.
I shared before about my struggles with chronic pain, I now have this as a side effect of surgery I underwent in 2011.
There are three ways to ‘treat’ Scoliosis;
If found early enough (i.e in very young children) they can be fitted with a plaster cast in order to prevent the curve from worsening over time.
When older, children can wear braces to prevent the curve from worsening until they stop growing – these can be plastic or elasticated braces. The most common onset falls between the ages of 10 and 20, so bracing makes up a large proportion of treatments.
Spinal fusion is an effective way to physically prevent the condition from worsening.
Between around 2008 and 2011 I had a combination of bracing and surgery. Thankfully I was never required to wear a plastic brace – my street cred was already pretty low and I don’t think I could have pulled it off. I had an elasticated brace that I wore daily underneath my school uniform which gave an incredible amount of relief.
Think of the waist-trainer fad, but bulkier and much less fashionable. It’s such a simple thing, but by lessening the pressure of simply holding my body up I was reprieved for a few hours each day. The difference made when not wearing it was stark, I used to have to lie on the kitchen tiles to allow the tension in my back to relax.
In 2011 I finally got a date for spinal fusion after waiting for more than a year, it was slap-bang in the middle of my 5th year Highers – I’ll blame that for my not being a doctor or engineer. Hey ho.
For most people a fusion is the end of the troubles they face with Scoliosis, however it only exacerbated mine.
Post-surgery you can expect to have minor complications in the early stages – it’s a massive trauma to have gone through – however as the years have gone on and my conditions haven’t faded, it’s been acknowledged that I’ll likely live with them for the foreseeable.
Some of these aren’t particularly bad; I don’t have any feeling in the pinky on my right hand which means I constantly drop my phone as I can’t properly feel the finger propping it up. At the other end of the spectrum, I have severe nerve damage in my leg which on a bad day makes it hard to get in and out of the shower and makes my leg drag on steps. You can read more about my experiences with chronic pain here and the difficulties in treating it.
And yet I wouldn’t change it.
It’s made me who I am, I have a greater awareness of other invisible illnesses. Due to the complications experienced through my Scoliosis I became a Young Trustee with Spinal Injuries Scotland – you can read about this here.
While Scoliosis Awareness isn’t one that needs you to donate for a cure; it needs awareness raised as the earlier this is caught, the easier it is to deal with.
Do you have experience in dealing with Scoliosis? Let me know how you managed.
You can find out more about Scoliosis and access support from SAUK here; they celebrate their Scoliosis Awareness Day on June 27th.