Larne support group offers companionship to people with sight loss

Libby has been diagnosed with wet age-related macular degeneration (AMD), where leaky blood vessels in the back of the eye can lead to central vision loss. It’s a form of macular disease, which affects more than 1.5 million people across the UK.

Like many others in her situation, Libby was scared about her future and as she did not drive, was worried about the impact to her independence having previously been social and outgoing.

She said: “I felt trapped at first, with no car because before I was like an animal in the Savannah to suddenly being confined to a safari park. I did have this great fear of missing out, but actually now I have no fear of missing out. I have realised, there are joys in the little things and I’ve learned to be quite content with my life now.”

She puts her change in attitude down to the support she received from the sight loss charity, the Macular Society. The charity runs support services face-to-face and online, as well as funding research projects to find new treatments and a cure for macular disease.

Macular disease can have a devastating effect on people’s lives, leaving them unable to drive, read or see faces. Many people affected describe losing their sight as being similar to bereavement. There is still no cure and most types of the disease are not treatable. Age-related macular degeneration (AMD) is the most common form of macular disease, affecting more than 700,000 people, usually over the age of 50.

“I tell people to contact the Macular Society because that was the best thing I ever did,” said the 78-year-old former bank service manager: “I found a lot of comfort from the Macular Society website where I would read other people's stories, which made me start to think that maybe this might not be as bad as I think it is. All you think about at the start is I’m going to go blind, but actually you’re not.”

Libby has been going to the Larne Macular support group where she has been able to speak to other people with sight loss, who understand life with a macular condition.

She said: “This has been great because nobody else I knew understood what it was like for me before, but I could now go to this group and meet other people with macular conditions. We chat over cups of coffee, have a laugh, get to know other people and you think ‘this is going to be okay’. It’s just at first, this diagnosis fills your every single waking moment. You can't get it out of your head until you can accept it.

“Having a support group has given me, as it does everyone, companionship. We laugh, there’s friendship and you come home after a meeting feeling all the better for it, because if I wasn't going to a macular support meeting, I would feel more isolated. It's good to talk to people who are in the same boat as you.

“It's great, I love it and I'm so glad that I joined.”

Thanks to the different support she has received, Libby is positive for the future, and remains hopeful of keeping her sight for as long as she can.

She said: “Macular disease changed my life with not being able to drive, but I didn’t want this to spoil the rest of my life. Now I live by the sea with the most beautiful, amazing sunsets but now I'm losing colour. It would be amazing to see like I used to, so it’s the small things like this I want to hold on to for as long as I can before they are gone for good.

“I am out there at night to take photographs, so I’ll still have those when my sight gets worse and I know there’s probably going to come a time when I can’t watch the TV at all, when it’s dark on a winter night and it’s just me and the dog. I will have to find a way to occupy my time then and find something to comfort me. I’ll deal with it at the time but before that, there's a few more summer sunsets to enjoy.”

The Larne macular support group meets every fourth Thursday of the month (not July and August) at Larne Market Yard, Station Road, BT40 3AA.

For more information on macular disease, call the Macular Society on 0300 3030 111 or email [email protected]

Macular Society services in Northern Ireland are funded by The National Lottery Community Fund Northern Ireland, we thank the players of the National Lottery who have made it possible for people like Libby to access the help and support they need.