Your stories

Hydrocephalus Awareness Week 2022 - Ryan's Story

7th March 2022


Ryan's Story...

"Shine has helped me meet others with hydrocephalus and be able to talk to others that have the same condition."

What was life like before you received support from Shine?

"It was rather isolating as I had not met anyone else with hydrocephalus because of where I live, it is rather rural, and my regional neurosurgical unit that does operations for hydrocephalus is a couple of hours away from where I live.

Unemployment was an issue when I finished my A-Levels and I had to take an unplanned gap year before starting university because I had to have a new shunt fitted due to my old shunt malfunctioning (the tube draining the fluid being broken in 3 places inside me)."

How has Shine supported you?

"Shine has helped me meet others with hydrocephalus and be able to talk to others that have the same condition as me through the Shine Coffee, Quiz and Chat events Shine Support and Development Worker Debi started during the pandemic lockdowns. Shine has given me opportunities including the disability rights and activism training run by the International Federation of Spina Bifida and Hydrocephalus (IFSBH) which was advertised by them, to which I was lucky to be one of only two people from the UK selected to go on the training in 2019. This was the last time the UK was going to be invited according to a member of staff at IFSBH due to Brexit.

I have recently found employment earlier in 2022.

I feel more confident now as I have met others with hydrocephalus, and it has made me happy to meet others that have shared some of the same life experiences as I have."

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