Changemaker Profile


Around 25 years old I was diagnosed with Ataxia. I first realised something was wrong when I was making a sandwich for work, and I couldn’t spread the butter on the bread. I found this hard to communicate with the GP, who thought I was just tired. This went on for 8 years and every time I was diagnosed with something new. I knew that something wasn’t right.

Finally, after further testing and seeing a consultant, my GP said I had a rare condition called Ataxia. Ataxia is a rather complex condition; the main characteristics is lack of co-ordination and lack of speech. People often think we are drunk, when we are not, we might just be slower than everyone. Once I knew I had a rare condition, I wanted to reach out to the people who were in the same position as me and help them feel less isolated. I started my own patient group to help spread awareness and provide people with information about Ataxia.

I live in a very small village of 17 people, so I am that 1 person out of 17 who lives or affected by a rare condition.

Artist Profile

Bingxin Feng

Bingxin Feng is a Chinese born, London based digital artist and filmmaker. Her practice takes form through moving images, filmmaking, photography, and interactive installation/performance design.

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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