The Macular Society

Macular disease is the no. 1 cause of blindness in the UK. It affects over 1.5 million people and, every day, another 300 people are diagnosed. Blindness is terrifying, it’s a loss of personal independence, privacy, dignity and leads to a steep decline in mental health.

“I just remember going home and breaking down. I cried so much I literally couldn’t breathe. I went into shock for a few days. I was terrified and felt sick constantly. I sometimes wonder when I think back how I got through those few days.” Katie, aged 31

The Macular Society’s vision is to Beat Macular Disease and our mission is to beat the fear and isolation it causes. We will do this by:

  • Finding a cure through research;
  • Providing the best advice and support through a range of services from peer support groups to our Advice & Information Service; and
  • Increasing the profile of the importance of eye health.

“I feel so much better having spoken to the counselling service. Before this, I was experiencing hallucinations. I didn't know what was going on. I had days when I didn't want to carry on. Understanding my condition and talking things through has made all the difference.” Jean

Looking ahead

With the number of people with age-related macular degeneration (AMD), the most common type of macular disease, set to double by 2050, it is a looming public health care crisis. However, with the support of organisations like the Syncona Foundation, we will be able to achieve our vision faster, helping people like Kelly and her family.

Kelly, aged 39, has a type of macular disease called Best disease. Here’s her story:

“I was diagnosed when I was eight years old. My mum has it and my grandma had it as well. I started struggling with my central vision about four years ago. Everyday things became more and more difficult, like cooking and making tea. I went back to the doctor and at the time I was learning to drive. But the doctor told me to stop my driving lessons and said I wouldn’t get a licence with my vision. It has a massive impact now. It affects nearly everything. It can be something stupid like cutting yourself when you’re chopping an onion. Something that should be a really normal task. You think ‘I should be able to do that’. And the worst of it is, two of my three sons have been diagnosed now too. They both have macular disease, just like their mum. They both want to be pilots, just like their dad. And that’s the one job they definitely won’t be able to do unless a cure is found. It is heart-breaking. Just knowing that the Macular Society is giving a lot of money to research is a great thing. I am so grateful for the research that’s going on. It might not mean a difference to my life because my eyes are really bad, but it could change my children’s life.”

On behalf of Kelly, her family and everyone affected by macular disease, thank you so much to the Syncona Foundation.

www.macularsociety.org