Jamie Ward was diagnosed with a rare genetic condition within weeks of going for his routine eye test and ended up losing his sight in both eyes just months later – despite having no symptoms
A man who lost his sight within months after being struck by a rare genetic disease had no symptoms before his routine eye test picked up changes in his vision.
Jamie Ward, 61, from East Molesey, Surrey, was diagnosed three years ago with Leber’s Hereditary Optic Neuropathy (LHON), a condition that causes rapid and irreversible blindness. Within weeks of a routine eye test showing a change in prescription, he lost the sight in his left eye. Six months later, he was blind in both.
The Channel 4 Head of Talent & Learning says he can now only distinguish shadows and outlines. “The last picture I ever saw was Van Gogh’s Sunflowers in the National Gallery,” he recalls.
The condition is usually inherited by boys from their mothers which causes blindness in their late teens and early 20s. It can go unnoticed, with no obvious symptoms in the lead up to sight loss. “I had no symptoms until I started losing sight in one of my eyes“, he says. “Within six months, I was completely blind.“
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After doctors told him he had limited time remaining with his sight, Jamie spent the six months completing what he calls a “vision bucket list,” travelling with his husband of 20 years, Ray, to France and Greece to take in iconic sights before his vision disappeared completely.
He also spent time with family, friends and looking at as many pictures of his beloved labradoodle Barlow as he could before he was no longer able to see.
It was during this period that Jamie first turned to the Royal National Institute of Blind People (RNIB), realising he would need help adapting to life without sight. The charity, he said, was vital in helping him rebuild his confidence and independence.
“I was determined to carry on working,” Jamie said. “I reached out to RNIB who provided really useful advice and guidance on how to relearn how to use my iPhone, where to go to get long cane training, and provided the occupational assessment so I could get the technology I needed at work. I can now do everything I could do before and have since then even taken on wider responsibilities.”
Now, with the support of his guide runner Ian Walker, Jamie is preparing to take on the Royal Parks Half Marathon on October 12 alongside 16,000 other participants. Between them they hope to raise £10,000 for RNIB. “Losing your sight is traumatic and you need someone to hold your hand through the process,” he explains. “RNIB was there when I needed them and I want to give something back to support others who are coming behind me.”
Training with Ian has given him a focus outside of work and a way to manage his mental health. “Running with my friend and guide runner has been, not to put too fine a point on it, a lifesaver,” Jamie admits. He will be cheered on during the race by Ray and colleagues Libby, Isabella, Matt and Lowri, who are also taking part.
But Jamie also wants to use his story to challenge perceptions about blindness and to highlight barriers faced by people with sight loss.
“With the right support, blind and partially sighted people can do pretty much anything,” he said. “And yet only one in four blind people of working age are in work. That is a shameful statistic. My message to everyone when meeting a blind person at work or doing sport: be an ally and break down barriers, don’t put them up.”
Jamie credits his parents and his older brother Mark – who also has LHON – with instilling a determination to make the most of life. He insists he has gained as well as lost through the experience, meeting new people and discovering opportunities he might otherwise never have had.
“I have utmost sympathy and understanding for anyone who is going through sight loss who wants to retreat within themselves and stay in a place of safety – let’s call it the sofa,” he says. “But with the right support you can get off the sofa and get back to doing nearly everything that you did before and more.”
To donate to Jamie’s cause, go to either his fundraising page here or his guide runner Ian’s fundraising page here .
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