Macular disease sufferers share their stories of living with the condition
- Credit: Newman Associates PR
With an estimated 20,000 people in Norfolk living with it, and around 28 people in the county diagnosed with the condition every week, macular disease is the biggest cause of sight loss in the UK. Next week (June 20-26) is Macular Week, and The Macular Society and Norfolk’s sight loss charity, Vision Norfolk, are joining forces. They want to raise awareness of the condition and highlight the support available to help sufferers lead full and active lives.
Macular disease is the biggest cause of sight loss in the UK, affecting nearly 1.5 million people. The condition can have a devastating impact on people’s lives, robbing them of the ability to do the things they love.
The macula, which is the central most part of the retina, is responsible for most of what we see, including our colour vision and fine detail. Those affected are often unable to drive, read, watch television or even recognise the faces of their loved ones.
There are many types of macular disease. Age-related macular degeneration (AMD) is the most common, affecting 600,000 people. It generally affects people over the age of 55.
The older we are, the greater our risk of developing the condition. Around one in every 200 people has AMD at 60. However, by the age of 90 it affects one person in five. We are, on average, living longer so the number of people affected is increasing.
There are two types of AMD: dry and wet. There is currently no treatment for dry AMD, which is a gradual deterioration of the macula as the retinal cells die off and are not renewed. But wet AMD, which sees abnormal blood vessels grow into the macula, can be treated with regular injections into the eye.
Macular disease can also impact younger people as they can develop a range of rare, inherited conditions called macular dystrophies. Some of these rare conditions can appear in childhood, although some are not diagnosed until later in life.
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Fortunately, there is a whole range of help and support available for those who are diagnosed with the condition, to enable them to lead independent lives.
Norfolk sight loss charity Vision Norfolk has Eye Clinic Liaison Officers (ECLOs) in the county’s eye clinics, whose role is to ‘catch’ people and help them come to terms with their diagnosis, in both emotional and practical terms.
Michele Burgess, ECLO at the Queen Elizabeth Hospital in King’s Lynn, says dealing with people’s fears is an important part of the role.
“It’s not only about treating the condition, but about dealing with the feelings and anxiety of the patient," she added. “The positivity of the patient is an essential part of treating the condition.
“When people are sent down from the wards, we can talk to them in a consulting room, reassure them and tell them about the support that is available. This is invaluable for patients, especially those who are newly diagnosed.”
As well as the ECLO service, Vision Norfolk offers a whole range of activities and support, from practical advice on equipment and technology which enables people to live independently, to a whole host of leisure activities aimed at countering the social isolation which can be caused by sight loss.
The charity also works closely with the Macular Society, a national charity which, as well as funding medical research to find better treatments, also runs a network of local support groups.
That includes three in Norfolk, in Dereham, Diss and Norwich, with the latter hosted by Vision Norfolk at its city hub.
Doreen Philcox, who lives in Thorpe St Andrew, is among those in Norfolk living with macular disease - but she doesn't let it get in the way of leading a full, active life.
A former nurse, Doreen retired to Norfolk in 1987, but in 2017 she noticed she was having difficulty reading. During a regular eye test, the 91-year-old was stunned to find the chart for her left eye was completely black.
"I was shocked because I wasn’t expecting it," said Doreen. "You expect that your eyesight might deteriorate as you get older, but this was something which wasn’t within my range of experience.
“I was terrified; you think your life is closing in on you."
Eventually Doreen was diagnosed with wet macular in her left eye, and dry macular in her right eye. Treatment has consisted of regular injections in both eyes – something which people commonly are scared of.
“The injections have kept it at bay and enabled me to live a full life," she went on. "I am so thankful for them. It’s strange what you become grateful for!”
Despite the initial shock of the diagnosis, Doreen is positive about life with macular disease.
She added: "You do have that fear and sense of loneliness when you are first diagnosed, and you have to have a period of adjustment – you will be frightened. But I would say don’t be too afraid – you do get used to it.”
Doreen was introduced to the Macular Society at the eye clinic, and has found the support it offers to be invaluable.
“Living alone, it was nice to meet people with a similar condition who were just getting on with it," she said. "You can share experiences, which in my case reinforced a positive future.”
She hasn’t let living with macular disease restrict her life, and has thrown herself into activities organised by bodies such as U3A and Vision Norfolk, with which she recently had her first experience of sailing on the Norfolk Broads.
Her advice is to reach out and accept all of the support available.
“You have to go out and search for a life for yourself," Doreen added. "If you are offered any help and support, take it. I am proof that you can live a full and active life with macular disease."
For Mary Tyrie, from Norwich, a mini stroke was the start of her macular journey.
The 85 year-old had always enjoyed good eyesight until September 2017, when the incident led to a diagnosis of wet macular in her right eye and dry macular in her left eye.
“I fell apart, I really did,” said Mary. “It took me quite a bit of time to accept it. I realised that I would have to make changes to my life, and would have to adjust.”
Seeking information, Mary Googled macular disease and found the Macular Society website. She used their telephone helpline to find out what support was available.
“We talked for about half an hour," she added. "There were a few tears, but it was good to have access to information, and to be reassured that life goes on.”
One casualty of living with the condition has been Mary’s passion for dressmaking, although she has been able to keep up her hobbies of knitting and crochet, and she still makes soft toys for children.
She also attends the Macular Society Norwich support group, a service she cannot recommended highly service.
“It’s useful," she said. "Sometimes we will have a speaker; sometimes we will just sit and natter, and share our problems. Talking with people who have been through it is a good way of getting over the fear.
“Talk to others. They will have been through the same thing as you, and to see that life goes on after the diagnosis is the best way of facing it.”