A Lindfield photographer who suffers from Guillain-Barré (GBS) has described the syndrome as ‘like losing the lottery’, but uses a positive attitude to get battle through it.
Dave Hill is holding an exhibition throughout July in the Paul Badham Gallery in The Orchards, Haywards Heath, to raise funds and awareness for the disorder.
He said: “It’s a variable disease, complicated, obscure, that’s why I’m putting on the exhibition, it doesn’t get enough funding and it’s a life changing event whether we like it or not. Fifteen hundred people get it a year, it’s like losing the lottery millions.”
Dave used to be a builder until he started experiencing severe weakness and numbness in his legs and arms, which characterises GBS.
“One day I was running around the scaffolding, and then suddenly I had to learn to walk again.
“You get a bit depressed, sometimes I want to go out but I can’t because I’m too fatigued, and you can go back in to hospital at any time.”
He says a positive outlook is vital, and always keeps a bright sense of humour.
“I always say I’m walking like Jo 90, I wobble like Thunderbirds, you have to be positive and talk about it that way”
Dave was paralysed in hospital for 12 weeks in 2009, and doctors told him he would not walk for a year.
“I think it was reverse psychology,” he explained.
“I looked at the V which was planted in 1887 outside my window for Queen Victorias 50th anniversary and thought that’s my goal, victory.”
After 12 weeks he left the hospital using a zimmer frame.
“It’s a strange illness, they still don’t know how it evolves and it affects 0.1 million people”
Guillain-Barré syndrome is an inflammatory disorder in which the body’s immune system attacks the peripheral nerves.
Paralysis may occur in the legs, arms, upper body and face. Severe cases may result in total paralysis and breathing difficulties. In some cases, GBS can be fatal, and because the cause of GBS is unknown, there is no way to prevent it.