‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.
Life doesn’t have to stop when you have a disability.
Hi, I’m Shona Louise and I’m from Hertfordshire in the UK. I live with a condition called Marfan Syndrome that has caused various secondary conditions and problems over the years. I’ve had spinal fusion surgery to correct Scoliosis and a total hip replacement, I also live with chronic pain across my body but particularly in my spine due to a Tarlov Cyst. I am also currently on the waiting list to have major open-heart surgery.
Marfan Syndrome is a rare genetic connective tissue disorder that can affect the whole body. The most affected areas include the heart, eyes, bones and joints, but everyone is affected differently. Even within families the condition can present more and less severely in different people. People with Marfan are often, but not always, tall with long arms and legs, we might have flat feet and bone deformities such as Scoliosis and a breastbone that dips in or protrudes out.
One of the biggest signs that is taken into consideration when diagnosing the condition are the associated heart problems. Marfan can cause the aorta, the largest artery in your body, to bulge. This creates an aneurysm that if left untreated can be life threatening.
How It Affects Me
For me it has been the skeletal and spinal problems that have had the biggest impact on my life. I had spinal fusion surgery to correct the curve in my spine when I was 16, a revision surgery for a complication at 17 and then a total hip replacement at 18.
I was also diagnosed with having a large Tarlov Cyst at the bottom of my spine that causes me a lot of pain when I’m sitting or standing. I use a powerchair full time outside of my home to get around as a result. I also experience a lot of generalised body pain and joint hypermobility which contributes to my mobility problems.
Until recently my heart was pretty stable but I found out at the start of the year that my aortic aneurysm has now reached the point at which we should intervene. I’m currently on the waiting list to have an aortic root replacement surgery to replace part of the aorta to prevent the aneurysm rupturing, a life-threatening event. I’ve always known I’d need heart surgery one day but it was a little bit of a surprise that it’s happening in my early 20s rather than in my 30s or 40s as I’d imagined.
I also struggle with chronic fatigue, migraines and I live with depression. Different problems and symptoms affect me each day, it really is all about being able to easily adapt to whatever problems my body throws at me next!
Learning To Adapt
My health and disability has changed a lot since I was 16 and it really had been a constant battle of adjusting to a new normal, to have things change again. I’ve learnt to take things one day at a time, looking too far into the future has never helped me and I find I miss out on the present if I spend too much time worrying about how my disability might change further.
Using a powerchair has been the thing that has helped me most over the years. Beforehand, I was mostly housebound and missing out on a lot of life, but receiving my powerchair opened up so many new doors for me.
Also, instead of working a regular 9 to 5 job, I am self-employed and my own boss. I can decide when I work and how many hours I work, meaning I can listen to my body when it needs to rest. I also use countless different mobility and daily living aids that help me do the things I love.
Have I Changed As A Person?
I wouldn’t say I’ve completely changed as a person due to my disability, but it has certainly enhanced certain qualities that were already present in me. I’m resilient and inquisitive, strengths that have grown massively in me over the past few years. If anything, my disability has made me more confident too.
As a teenager I was shy and quiet but I am a much more confident person, who is not afraid to speak her mind. I’ve said yes to opportunities that I never would have even considered before my disability, and it was feeling confident in my identity that developed that within me. I’m also a lot more social now I have my powerchair and I don’t have to worry about my chronic pain so much!
My Favourite Superheroes
I really love all of the Guardians of the Galaxy films so I think that little team has to be my favourite!
Thank you so much Shona for raising awareness!
If you would like to stay up-to-date with Shona, you can find her on Twitter, Instagram, her blog Shona Louise, and her Etsy shop too! Please bear in mind, Shona is in recovery from her open heart surgery at this current time.