Sarah’s story: helping Moorfields to find a cure for Stargardt
31 January 2020
Sarah she was diagnosed with Stargardt disease at the age of 28. Now she is helping researchers at Moorfields Eye Hospital find a cure.
As she sat in the waiting room to see her eye consultant, Sarah thought about what type of glasses she might get.
She had been struggling to see clearly in recent months and her eyes were becoming irritated more and more easily, especially in dim light.
She didn’t have to wait long before she found out why. Sarah’s doctor made her an urgent referral to Royal Derby Eye Clinic, where she discovered she had Stargardt disease.
In that moment my whole world upside down. I was so frightened, I was facing the idea of going blind with a six month old baby.
What is Stargardt disease?
Stargardt disease develops when an area of light sensitive cells at the back of your eye (the macular) begins to waste away. It is a genetic condition and can cause severe sight loss.
The macular is part of your retina, and it’s responsible for detailed vision - you would need it to watch TV or read, for example.
In Stargardt disease, the cells in the macular begin to die. This leads to a loss of detailed vision and a reduced ability to see colour, as well as blurriness and blind spots.
The macular is only responsible for central vision, so Stargardt disease doesn’t usually cause loss of peripheral vision. However, many people with Stargard disease will end up with severe vision loss.
1 in 9,000
Stargardt disease affects one in every 8,000-10,000 people
Since Stargardt is an inherited genetic condition, symptoms usually begin to show before the age of 20.
Currently there is no treatment or cure for Stargardt disease. People living with Stargardt disease should wear UV-blocking sunglasses to protect their eyes from further damage.
Trials are currently in progress investigating whether stem cells could be used to repair the macular and restore sight to patients with Stargardt disease.
For the next two years Sarah tried to carry on as normal, but her sight was getting worse.
She found a support group online where one user told her about getting help at Moorfields.
Though there was no cure for her condition, Sarah hoped they’d be able to help. “I begged my GP to refer me,” she says.
Making a change
Sarah came to Moorfields for the first time in 2018, where she met her new doctor.
She became part of a revolutionary research project called the 100,000 Genomes Project, which aimed to help 85,000 NHS patients affected by rare disease or cancer.
For Sarah, it was a way of contributing to finding a cure for Stargardt.
For the first time since my diagnosis, I felt like there was hope. I’m grateful I was able to take part.
Sarah is still fighting to find a cure for Stargardt. In 2018, she faced her fears by skydiving – and raised an amazing £1,165!
She donated the funds to Moorfields Eye Charity so that Moorfields’ research into finding a cure for Stargardt can continue.