Macular disease is the no. 1 cause of blindness in the UK. It affects around 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
“The Macular Society has made a huge difference to us. My dad will forever be grateful for the immense support he has received.” – Gemma
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.”
Margaret’s story – Margaret has age-related macular degeneration:
“Most people don’t know about, or don’t understand, macular disease and the impact it has on those of us who have it. As you get older, you have more things wrong with you, and you just can’t contemplate what’s going to be ahead. Apart from when you’re asleep, you’re always using your eyes, so you’re constantly reminded that, ‘I have macular disease’. Macular disease is always with me and I think about what I will lose as my eyesight continues to worsen. But the year before I was told about my age-related macular degeneration, I was diagnosed with breast cancer. I had an operation and radiotherapy, and I’ve been clear for five years. It showed me just how miraculous medical research can be. The scientific brains are out there finding out about things and making improvements. Thanks to the work of scientists, there is a prospect that the injections will slow down the progression of my disease and maintain my vision for longer. I am so grateful to all who have dedicated themselves to improving our lives and for working tirelessly to find a cure for everyone with macular disease.”