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Paul Arvidson

Participant Panel member

Paul enrolled at the back end of the DDD study and then in the last couple of years of the 100,000 Genomes Project when all the neurologists at Bristol Childrens and GOSH had run out of places to look for their daughter Eleanor's deteriorating condition. Her neurologist at Bristol guessed (correctly) that the two different sets of symptoms she was presenting with (weak muscle structure and cerebellar ataxia). We got a result from 100,000 Genomes Project in 2018. Eleanor has a fault in her CTBP1 gene, a fault that only a dozen children in the world have and at the time she was the only child with her condition in the UK.

Paul has been a member of SWAN UK since 2014 and became the Dad's Rep in 2016. He's since been trying to amplify the voice of Dad's of kids with rare and undiagnosed conditions, when sometimes it's the hardest thing to talk about for a cohort of people who like talking least.

In his spare time, Paul is an Indie published writer of Science-Fiction and Thrillers. He realised that even in this part of his life he can't help writing about disability. The Sci-Fi world he writes in is set completely in the dark so sightedness or lack of it is a theme. The thrillers have Cady Grey, a teenaged SWAN, wheelchair-driving, amateur detective at the helm. He lives in the wilds of Somerset, with his wife, both daughters and an ex-townie bemusement about why it's impossible to get take away deliveries.

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