Stronger Together

The unpredictability of having a rare condition

B+W image of Shona

Life can be unpredictable, a lesson we have all learnt the hard way over the past year. It’s something that I have always been acutely aware of though, with having a rare condition. I was officially diagnosed with Marfan Syndrome, a rare connective tissue disorder, at 2 years old but my Mum had known throughout her pregnancy with me that I shared the condition she had herself. From that moment on, everything was unpredictable.

Living with a rare condition is all about constantly adapting to a new normal, you have to be prepared for the unexpected.

The first hurdle that was thrown at me was scoliosis, the curvature of the spine. I started adapting to not being able to climb the stairs at school and needing more rest than my peers, but the surgery that followed to correct my spinal curve was the first time that I found myself majorly adapting my life due to the unpredictability of my condition.

Over the years I’ve had new symptoms appear and further surgeries done, as well as adapting to using a powered wheelchair, but it was the news I received on New Years Eve 2020 that has shown me just how unpredictable life can be when you have a rare condition.

Marfan Syndrome can cause a few different heart problems, but for me it’s always been my aorta that has been monitored, this is the large artery that carries blood from your heart to your body. In people with Marfan Syndrome the aorta can stretch and bulge, creating an aortic aneurysm, and all my life I’ve had yearly check ups to keep an eye on this. Heart surgery was always inevitable for me but cardiology-wise I’d been stable throughout my life, so I assumed that this surgery would take place in my 30s or 40s.

So, when the phone call came on New Year’s Eve to tell me this operation would be going ahead this year, at 23 years old, I was a little taken aback.

Shona at the I am number 17 launch art exhibition Image of Shona in London

My overall condition has been fairly stable for a few years now, apart from a few new aches and pains, so I feel like I’ve finally had enough time without surgeries or investigations to adapt to my current ‘normal’. It’s given me time to focus on my career, hobbies and social life. So, for me the most daunting aspect of all this is that I’ll need to adapt to a new normal again. Everything I know about my body is going to change once more, and with that will undoubtedly come lifestyle changes. Often it feels like just as I manage to figure out how to live my life alongside my condition, something new is thrown into the mix.

But, I have almost ten years of experience of tackling tough situations behind me, my rare condition has made me stronger and I know I’ll be going into this new surgery with all of the wisdom from the previous three.

I feel really grateful that I’ve grown up in a generation where I can speak to others with similar experiences with just a click of a button, being able to ask others questions and get their advice has already been incredibly valuable. It’s really comforting to know you aren’t alone. I’ve learnt so much from my fellow changemakers over the past year already. Our conditions might be rare on their own, but together we are many and that is powerful.

Life with a rare condition can absolutely be unpredictable, with bumps in the road and unexpected road works, but it has also taught me a lot.

I’m stronger than I think and I’ve proven to myself again and again that I really can tackle anything.

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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