I suffer from a condition called Epidermolysis Bullosa (EB), which means my skin and other membranes in my body, like the lining of my mouth, of my gut, and even my eyes, blister painfully even on mild contact, and that these wounds never heal properly. I’ve had the condition since I was born, and it means that I live in pain every day.
In the UK around 8000 people have EB. Although there’s no known cure or treatment yet, my family and I are working hard to fundraise for research to help these people. As the face of the Sohana Research Fund, I appear in all our photos and videos to highlight EB – as well as fronting a social media campaign.
The Sohana Research Fund managed to fund the first clinical trial for me and nine other children with EB. Since then we’ve funded two more, as well as other significant projects. Although it’s sometimes physically and mentally tiring to be the face of a campaign like this, knowing I can help other children who suffer like I do spurs me on and gives me motivation.