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.

Launch Art Exhibition

I am number 17 launched in January 2020 with an art exhibition at the Oxo Gallery, showcasing each changemakers experience. Each changemaker was paired with an artist to create a bespoke piece of artwork, ranging from paintings, photography to physical installation. Below you will find information on the artwork created and the artists profile.


This piece is about independence and taking control of your life. When talking to Shona, the subject of the illustration, it was clear to me that being independent was of great significance to her, not allowing anything to hold her back. Not allowing surgeries or experiences to stop her from pursuing her passions, she has seen those passions grow into amazing opportunities as she ventures into each new chapter of her life.

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.

TAKE CONTROL by Grace Lanksbury

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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