Changemaker Profile

David

I have occipital horn syndrome. I call it OHS, it’s ultra-rare and I’m the only person in the UK living with it.

It wasn’t until I was 24-26 when I had genetic testing that I received my diagnosis. If you’ve grown up with your disease from day one, you never know what it’s like to be healthy. I’ve never lived a day without pain. The disease affects every aspect of my life.

With regards to people with rare diseases, it feels like everyone likes to talk about us, but no one really wants to help us. Lots of companies have this blue tick scheme which means they’re disability friendly, I think it’s a tick boxing, token exercise. When you have a rare disease, it affects you differently day-to-day. People with rare diseases get pushed aside out of work, into a rare disease bubble.