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Tens of thousands of NI people could be left blind by age-related eye problems, claims charity

By Sophie Inge

Published 22/11/2016

Elaine Orwin had to give up her career due to her sight
Elaine Orwin had to give up her career due to her sight

Northern Ireland could face a blindness epidemic with tens of thousands losing their sight, a new report warns.

The Macular Society report calls for more investment in research into Age-related Macular Degeneration (AMD) - the biggest cause of blindness here.

Some 15,000 people in Northern Ireland suffer from the condition - which affects the central part of the retina called the macula - out of an estimated 600,000 across the UK.

But with an increasing ageing population, this figure is expected to more than double to 1.3 million by 2050 - the equivalent of 400 new cases every day, according to the report.

The report highlights the fact that just £6m out of the total £22.7m spent on eye disease medical research in 2014 was allocated to AMD, which is currently incurable and largely untreatable.

It calls for more funding to be allocated to scientific research to find better treatments and, ultimately, a cure for AMD.

Karen Toogood, the Macular Society's Northern Ireland regional manager, described it as an "urgent public health issue".

"Unless strong action is taken right away, we will be facing an epidemic in the decades to come," she said.

"AMD is almost as prevalent as dementia and represents a huge cost, care and societal burden, yet it does not receive a level of research funding proportionate to its impact.

"Alongside the devastating personal consequences of sight loss, AMD costs the UK £1.6bn annually.

"The drug costs alone are now more than £200m a year and the number of people with AMD is expected to double by 2050."

The report - Age-related Macular Degeneration: collaborating to find a cure - has been backed by nine eye experts from Northern Ireland, including Usha Chakravarthy, Professor of Ophthalmology and Vision Sciences at Queen's University, Belfast.

She said: "I wish the Macular Society every success with its campaign to increase funding for robust scientific research into the prevention and treatment of sight loss.

"The society has been at the forefront of this area of work for many years, which has helped improve the lives of people in the UK who have macular disorders."

The report recommends bringing researchers together in a unified approach to AMD research, and securing a new funding model to support it.

Elaine Orwin, from Bangor, Co Down, knows more than most about the devastating effects of the condition, which can leave people unable to drive, read or see faces. As a young child, she was diagnosed with Juvenile Macular Dystrophy - a form of macular degeneration that affects young people.

"When I was four my mum noticed that I was holding things very closely and suspected there was something wrong with my sight," she told the Belfast Telegraph.

Elaine added: "So my parents took me to the hospital, where I was diagnosed with macular degeneration which is hereditary on my father's side." Over the years, Elaine's sight continued to deteriorate.

"By the age of 11 I was unable to see people's faces, which as you can imagine is very difficult socially.

"But I just got on with things and became a teacher, teaching for 25 years."

However, aged 47, Elaine's sight got so bad that she was forced to give up her career, after following the advice of her GP.

"It was then I realised just how stressed I had been, even by what seemed to be the smallest thing, such as sitting in the staff room and not recognising people's faces," she said.

Elaine (54) now runs a support group in Bangor where members share their experiences.

Problems range from the loss of independence that comes from being unable to leave the house alone or giving up driving to being unable to cook or use kitchen utensils safely.

"But the main factor is identifying people," she said. "It's so frightening when you can't see people's expressions or identify friends. Many people don't want to go into social groups."

As well as helping to find a cure, it is also hoped the charity's campaign will encourage more people to get their eyes checked to increase early detection.

"If you notice a little difference in your sight - for example a little wavy line or blurriness - don't ignore it and make sure that you see to it as soon as you can," added Elaine.

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