20 Years On: My Rare Disease Story скачать в хорошем качестве

20 Years On: My Rare Disease Story

In this video, I'm heading to Copenhagen to take part in a rare disease awareness campaign — sharing my story as an Acromegaly patient and advocate to help medics, researchers and pharmaceutical teams better understand what it means to live with a rare condition. Diagnosed with acromegaly in 2007 — a benign tumour of the pituitary gland — and also living with the exceptionally rare Wyburn Mason Syndrome, rare disease advocacy has become a huge part of my life. In remission but never quite "done" with it, I've spent years sharing my story in the hope it helps others who are newly diagnosed feel less alone. It's been a difficult few months personally, with my Mum recovering from a stroke since September, so getting back to doing this meant a lot. In the video I talk about: What acromegaly is and how it's diagnosed The importance of early diagnosis The emotional and physical impact of living with a rare condition Why patient voices matter in drug and treatment development Rare Disease Day is February 28th. 1 in 17 people live with a rare disease — rare by name, but collectively far from uncommon. If you'd like me to speak at your event or to your team, get in touch via danj.uk.