David Rose is an ultra-rare disease speaker and the Business Development Associate at Rare Revolution Magazine. He is the only person in the UK living with Occipital Horn Syndrome OHS.
Since childhood, he has undergone around 100 operations – but was only formally diagnosed with the condition at the age of 25.
David bravely speaks out about how isolating it can be to not have anyone to relate to — he has only ever met one person online with OHS, who lives in Germany.
OHS is a form of Menkes disease, which is characterised by connective tissue disorders and progressive neurodegeneration, caused by a copper deficiency.
It affects David’s entire body inside and out, impacting his muscular-skeletal system and causing severe joint pain — anything from typing to using his phone is painful.
It also causes issues with his bladder, heart and kidneys — he has had to use a catheter since age 7 and had his left kidney removed almost 10 years ago.
David had a breakdown in his early 20s and had to quit a job he really loved. Now he is empowering others by speaking about his experiences.
He has been involved with Great Ormand Street Hospital (GOSH) for almost a decade as a member of the Young Person’s Forum and as a charity ambassador. He thanks this involvement for getting him into patient advocacy:
“They [GOSH] were the stepping stone for me to realise I needed to speak out and I learnt about public speaking. They were also the steppingstone to working in rare disease.”
David started doing lots of talks at advocacy events and joined the staff of Rare Revolution Magazine, initially as a social media assistant and then moved to sales and business development, and also speaking at lots of events.
David says he has accepted his condition, observing that rare diseases can often be ‘character builders,’ but says he finds it mostly ‘frustrating.’
He said: “Companies focus on the more common diseases, as they should do, because they affect the most people. That’s the nature of it. ‘But knowing there’s no cure is frustrating. The name of what I have is almost irrelevant, if there’s no cure. I know that sounds quite morbid, but that’s the way I look at it.”
He is now taking part in Takeda’s ‘I am number 17’ campaign. It aims to amplify the voices of those living with rare diseases and raises awareness of the fact 1 in 17 people across the UK will be affected by a rare disease at some point in their life.
Tags: patient advocacy, rare diseases
“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.”