Event
Fri 18 Oct 2019 14:00
What's it like living with two rare medical conditions? Meet Dan Jeffries
For this talk we are joined by Dan Jeffries, who as a child was diagnosed with Wyburn-Mason syndrome. His talk explores growing up as such a rarity and writing a memoir about it.
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Dan Jeffries
Dan Jeffries is very, very rare. Born with a condition called Wyburn-Mason syndrome which affects the vascular system, it has left Dan blind in one eye and short-sighted in the other. It is thought there have been less than thirty reported cases in the last fifty years - worldwide. That equates to 1 in 70 million. That’s rare. And then, as he turned thirty, he was diagnosed with another rare condition: Acromegaly, caused by a benign tumour in the pituitary gland. In October 2015 Dan published his memoir, 'Me, Myself & Eye'. It tells the story about growing up with such a rare condition and how it impacted his life at school and University. It reflects on love, life, creativity and what it is to ‘be a man’. And, of course, the incredible discovery of his other rare condition. It’s an incredibly uplifting story with moments of real hilarity, tinged with moments of tenderness and pathos. There have been over fifty reviews on Amazon, with an average rating of 4.8. Dan went to school at Queen Elizabeths Hospital in Bristol before studying Drama and Theatre Studies at University of Kent at Canterbury. He lives in Bristol and works in Online Learning. He is also a DJ and Producer.Diagnosed at age four with Wyburn-Mason syndrome, a condition that effects less than 1 in 70 million people, Dan’s talk explores growing up as such a rarity whilst attending boarding school in Bristol. And then - purely by chance as he was turning thirty - Dan was diagnosed with another rare condition.
Dan published his memoir Me, Myself & Eye in 2015 and whilst his presentation explores living with rare conditions he also discusses the creative process that went into putting the book together, exploring crowdfunding, collaborative working, developing an interactive reading experience and where he’d like to take the book next.
Being Rare is a funny, open and honest presentation that will have you laughing, thinking and contemplating what life must be like with not one but two rare conditions.
"Dan’s talk managed to be informative and entertaining, insightful and moving, educational and inspiring. You don’t often find presentations that manage to combine all of those qualities! I left with a deeper understanding of what it is like to live with rare conditions, and also with a smile on my face."
Signed copies of the book will be available after the talk. Books will be £10 and you can pay with cash or via paypal.
This Lunchtime Talk is part of Open Studio Friday, which takes place at the Studio every week.
Do you want to find out what is going on at the Pervasive Media Studio? Are you interested in meeting our residents, talking about a specific project or curious about pervasive media? Why not pack a sandwich and join us for one of our Lunchtime Talks and Open Studio Friday. Lunchtime Talks are informal presentations by Studio residents and associates. They normally take place at 1pm on Friday, are free and open to everybody who’s interested in what we do. After the Talk, we also invite you to stay with us for the afternoon to continue the conversation or work on your own projects. We provide chairs, tables, wireless and a great space. You bring what you need to work with (laptop/mobile). Our open afternoons close at 5pm. Let us know if you’d like a tour of the space and we'll be happy to show you around just before the talk. Send an email to: studio@watershed.co.uk to book your place on a tour.
