Katie Berrill: walking Eye to Eye for Stargardt
7 January 2020
Katie had never heard of Stargardt disease when she was diagnosed with it. There is currently no cure for Stargardt, so Katie decided to support our research into it.
Katie discovered that there was something wrong with her sight after a routine eye appointment, when her optician referred her to a local hospital.
A specialist consultant there tested Katie for Stargardt disease – but told her she would have to wait months to find out the result.
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.
In September 2017, Katie’s fears were confirmed at Moorfields when she discovered she had Stargardt macular dystrophy, a rare genetic eye disease that causes sight loss.
There is currently no treatment and no cure.
When you find out you are losing your vision, it’s almost the same emotion as bereavement. To this day I am still grieving.
Katie was very scared and upset - but although she is losing her sight, Katie is lucky.
Stargardt normally begins in childhood, but because Katie experienced a late onset version of the disease, it means that she has retained good vision for over 30 years.
“I just thought that it was normal when I couldn’t see someone’s eyes or nose a few metres away,” she explains. “The onset has been so gradual I never questioned it.”
Making a change
“It’s so hard living with a progressive eye disease that you know will only get worse and having to literally watch your vision slip away without being able to do anything about it,” Katie explains.
To know that at some point in your life, you can expect to have no central vision and won’t even be able to recognise your own child – that’s very hard to live with.
But while Katie is worried about what the future will bring for her, she is also determined to do all she can to support research into Stargardt and find a cure.
Moorfields are working tirelessly to try and find treatments, but without much needed funds, it can’t happen.
Our Eye to Eye Walk
- A walk from Moorfields Eye Hospital past the new Oriel site
- Two routes – 5 or 15 miles
- Moorfields patients, their loved ones, staff and researchers coming together to show their thanks
- Every penny raised helps to change the lives of those living with sight loss
In 2018, Katie took part in Moorfields Eye Charity’s annual fundraiser – the Eye to Eye walk – with her husband and her son Harvey. “It was Harvey’s idea to do this walk,” she explains, “it’s the only way he can try and help us.”
“My family are an amazing support and have helped me through the best they can. I am doing this for them,” she says. “I am also doing this for everyone else who is living with an eye disease and the amazing people I have met and spoken to with vision loss.”
Katie and her family completed the route together and raised a phenomenal £1850 for Moorfields Eye Charity! This amazing donation will help Moorfields invest more into life-changing research and innovation.
Well done, Katie!