Imagine the terror of walking one minute then being completely paralysed the next. This is the living nightmare that Leonard Wahinya faced. He’s still fighting to get his life back again.
In 2011 the 47 year old returned to the UK after a trip to Kenya for his fathers burial.
Less than 24 hours later his health took a turn for the worst.
Video: Leonard retells the day he fell ill.
Guillain-barre syndrome is a rare condition whereby the immune system attacks the nervous system.
It affects 1 in 100,000 people.
People of all ages can be affected.
Symptoms usually begin on the hands and feet.
The cure and cause of the condition is yet to be known.
Years after being diagnosed patients can continue to experience muscle pain and stiffness.
The longevity of the syndrome is different for each person.
Due to the rarity of the syndrome, it took weeks before medical experts had any idea what they were dealing with.
As a result, Leonard was left with devastating consequences.
“i was sat there waiting for death to come”
leonard wahinya, GBS SUFFERER
“For the first two months I was in ICU.
“Every week, every now and then being told you was going any minute was very scary.
” So I was sat there waiting for death to come,” he said.
Video: Leonard reflects the traumatic experience of not knowing what he was suffering from.
He talked about his family and the significant role they play as he continues his journey with GBS.
He said, “Had it not been for them I don’t know whether I would’ve even bothered fighting this condition.”
Prior to his diagnosis, the father of one, was a history teacher at Bedford Academy and spent a few years before that as a chef.
Six years on and Leonard is still living with the aftermath of the syndrome.
“I AM TRAPPED IN MY OWN HOUSE WITH GBS”
LEONARD WAHINYA, GBS SUFFERER
“Its robbed me of so much I could clean my house, I could do the laundry.
“I’m more or less immobile, basically I am trapped in my own house with GBS,” he continued.
Video: The physical effect of GBS.
Caroline Morrice, chief executive of Guillain-Barre & Associated Inflammatory Neuropathies (GAIN) charity, aims to provide GBS sufferers and carers with support and spread awareness.
GAIN has organised various projects such as Getting Better Slowly whereby those affected by GBS can network and build connections.
The project has been touring nationally since last year and is famously known for the inspiring story performed by a previous GBS patient.
A key issue highlighted in the play is the lack of attention given to those affected after being discharged.
“IT’S THAT going HOME bit that we need to work on”
CAROLINE MORRICE, CHIEF EXECUTIVE OF GAIN CHARITY
“When they go home, medical experts don’t see what happens next and it’s that going home bit that we need to work on.
“It’s a shame because we do meet people that can’t see past the illness,” she said.
Despite the uncertainty of a full recovery, Leonard maintains hope for his son.
“He’s nine I want him to grow and at least have the daddy aspect in him until the age I know I can tell him certain things.
“After that I’ll decide my next chapter in life,” he said.
Helplines are available to carers and sufferers of the syndrome as well as online support.