When I was first diagnosed with linear scleroderma (also known as en coup de sabre) in high school, I was devastated. I fixated on my appearance, particularly the indentation on my forehead, even begging my dermatologist for filler before our leavers’ prom.
Growing up as a gymnast, some of the most upsetting comments came from schoolmates. They used to mock me, insisting that the tight “doughnut bun” I always wore had caused the dent in my head. In reality, I had contracted a bacterial infection during the completion of my Silver Duke of Edinburgh Award, which rather put me off pursuing my Gold afterwards!
Over time, I came to understand that living with scleroderma involves far more than cosmetic changes. During my first year at university, while on Methotrexate to keep the disease latent, I spent nearly three months in hospital fighting Lemierre’s syndrome due to my weakened immune system. That experience profoundly shifted my perspective.
I’ve since recovered and am now in excellent health. Although, I still see my dermatologist biannually, who superficially monitors to ensure my dent hasn’t gotten any bigger. I now look at my “sabre strike” with appreciation rather than shame. It makes me unique.
I’ve learnt not to take curiosity personally. Linear scleroderma is rare, and I may be someone’s first encounter with it. I understand that most people are inquisitive by nature, and I’ve come to enjoy sharing the story of how my dent came to be. I’ve tried to meet those moments with patience and understanding.
Acceptance often comes with age. As a teenager, most issues surrounding my appearance felt soul-destroying, and my visible difference was no exception. Now, I’ve found that the company I keep has made an enormous difference. The people close to me see my visible difference as I’ve come to see it – a unique feature that’s simply part of who I am.
Having experienced both the emotional impact of diagnosis and serious medical complications, I understand that scleroderma affects people in deeply personal and varied ways.
Looking ahead, I’d really like to raise awareness of linear scleroderma – particularly its lesser-known neurological effects.
I’ve just finished my Biomedical Sciences degree, which was a huge struggle at times. As part of my degree, I learned about scleroderma from a clinical perspective, but I remember how isolated I felt during those lectures, convinced everyone was staring at me.
I also feel that I’ve experienced some of the cognitive effects, such as brain-fog, memory issues and periods of difficulty concentrating, which have been hard to reconcile at times. It’s especially emotional to look back at my younger self, full of confidence, declaring to Gary Spence on Capital radio that she wanted to be a doctor (with a plethora of A grades under her belt). To compare that to how challenging my Biomedical Sciences degree became at times, including a litany of resits and special circumstances applications, is tough.
Medicine has been my lifelong dream, even before my first diagnosis, and I’m now working my way back onto that path. If I’m successful, I’d love to contribute to research that delves beyond the visible changes and explores the wider neurological picture of scleroderma: seizures, focal deficits, headaches, ataxia, cognitive decline, cranial nerve palsies, and movement disorders.
I want to help others navigating this rare disease feel less alone. Having experienced both the emotional impact of diagnosis and serious medical complications, I understand that scleroderma affects people in deeply personal and varied ways. I hope to offer support, understanding, and connection to others in our community.
My main advice would be, try not to take people’s reactions personally. I know responding with confidence takes practice, but I remind myself how long it took me to accept my “new” appearance – scars, sabre strike and all.
