Your stories
5th March 2021
"I received critical support from the health team, at a time I was really struggling and was in and out of hospital."
Erik has had hydrocephalus since birth. He had a revision at the age of 1 and developed meningitis. Erik’s hydrocephalus was stable for a while after this and then he developed epilepsy and started having vision problems. He had another shunt revision in 2016 followed by multiple revisions in 2020 which led to further sight loss.
Erik is a determined individual and has always worked through hardships with a smile on his face.
Before receiving support from Shine, Erik felt isolated due to his hydrocephalus. He was unable to talk about how he felt, and how hydrocephalus affected him, apart from talking to his wife. Erik felt as though he couldn’t speak to anyone about his condition as his disability isn’t visible and no one knows much about hydrocephalus.
"I have found it helpful to have someone to speak to, someone that understands hydrocephalus and how it affects me. It’s a big deal for me to be able to pick up the phone and talk to my support and development worker about hydrocephalus. I received critical support from the health team, at a time I was really struggling and was in and out of hospital. The specialised hydrocephalus knowledge has been a game changer."
If you've been affected or inspired by our member's stories, you can help Shine support more people just like them by making a donation today. Your donation will help Shine support our members live life to the full and provide vital information for new members at a crucial stage in their lives.