Changemaker Profile


My mother knew when she was pregnant with me, that I would have Marfan Syndrome. My grandfather passed away from the condition when my mother was a child and I was showing signs of the rare disease. When I was 14, I was diagnosed with scoliosis, which affected me more at school. I had an operation and experienced a complication, which led to me eventually having to drop out from school during my A-levels.

I want people to understand we are human; we have jobs and social lives and we are not just our conditions. I also want to inspire other people living with a rare disease to speak out and use their voice. It is important to have as many voices out there as possible. Not one person is the same. People underestimate the value of using their own voice. Raising awareness is how we fight the stigma surrounding rare diseases.

Artist Profile

Grace Lanksbury

Grace recently graduated with an illustration degree from Bournemouth this past summer. Her work has a strong focus on narrative whether that’s through one image or multiple. A lot of Grace’s projects are based on real people, with my last being inspired by interviews she did with the elderly in which she told their stories in the form of an illustrated book. Grace’s style is quite stylised, often colourful and bold as well as incorporating texture.

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 #IAmNumber17.

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