I have occipital horn syndrome (OHS). 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.
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.
Copper in the body is a connector of tissues. We might physically lack it but it can run through our name – through the veins of our identity. We are our passions and our skills. These are connected to us and transported from our inner selves outwards. We get up, put on our tee, take a bag and leave the house – out into the world. David has occipital horn syndrome (OHS) and is the only person in the UK who has OHS. He speaks and educates about his rare disease in various conferences. David works with Rare Revolution magazine in their sales and business development team. He also volunteers in GOSH which is where he received treatment as a child. OHS is a gene mutation disease. It is caused by a deficiency in the transport of the essential mineral copper. Copper is in charge of tissue connectivity in the body. It causes musculoskeletal problems and also affects internal organs like the heart and kidney. As it stands there is no cure for the disease.Artist Profile
Michal Pollard is a London based designer. She creates illustrations and prints for a range of surfaces. From fashion, textiles through to paper and retail displays.