“If you’re informed then you’re not frightened - that’s half the battle”

Former ophthalmic nurse Regan was diagnosed with age-related macular degeneration (AMD) three years ago, having spent her career helping people with visual impairments.

She started volunteering for the Macular Society after 44 years in eye clinics where she offered macular disease advice, then in 2023 she was told she had the early signs of dry AMD herself.

Regan currently uses an Amsler grid to check for wavy lines but while she has seen no deterioration in her sight so far, she said it was important to keep informed and know more about your condition.

Macular disease advice

Regan said: “When I was working, directing people to the Macular Society was always a key part of our patient information because you wanted to help them and get advice for living with macular disease. Those leaflets just gave people that little bit of encouragement for when they need it, it can motivate people to go and do something for themselves and through reaching out, to get that support can stop them feeling so isolated.

“I have always felt informed, and if you’re informed then you’re not frightened. That’s half the battle.

“I’ve reassured people over the years, and I hope that has made people feel more okay about what they have to live with. With the facts and information, you know how to avoid future problems or manage it as best as you can.

Support for macular disease

“That’s where the Macular Society plays such an important role, and those leaflets with the information and the key phone numbers can make all the difference.”

Regan, 75, has encouraged anyone facing a diagnosis to talk about their feelings.

“Communication is key,” she said. “Talk to relatives, talk to a friend. Because you’re going through a loss of your sight and while you can adapt to losing some part of you, for some people losing vision is the most tragic thing.

“Listen to how you can learn and adapt. Don’t be left in limbo when you’ve got a diagnosis, draw breath and when you’re ready talk about what’s happening to you and look for support because that can help you get through it and not be so isolated.

“You’re losing part of your sight and there are ways and means of overcoming that and part of it is reaching out.”

Support groups for living with macular disease

Regan is the support group leader in Cranleigh, Surrey, where she continues to see the impact macular disease has on people.

She said: “When people first come to the group that alone is a big step for them. It’s being able to speak to other people who you can then be open with and relate to because you all have issues related to your sight.

“People begin to feel more confident, they buddy up and it becomes a confidence thing; people rediscover their confidence because that is something you can lose when you can’t see as clearly as you once did.”

Take Action for Mental Health Awareness Week 2026

This week marks Mental Health Awareness Week, which this year celebrates the theme of ‘Action’.

The Macular Society encourages everyone diagnosed with macular disease to take action to fight the fear and isolation by reaching out for support.

If you are living with sight loss and would like to reach out for support or advice contact our Helpline on 0300 3030 111 or email help@macularsociety.org