Northampton mum who suffers with rare eye condition ‘that will only get worse’ urges others to look after their eyes

A mum-of-two who faces not being able to see her children is warning other people to take care of their eye health.

Thursday, 16th January 2020, 7:30 pm
Katie, her youngest son Sawyer who is six-months-old, Harvey and her husband Greg.

Katie Berrill, from Bugbrooke, noticed she was starting to struggle to read road signs at night, but did not think much of it until she went to the opticians.

The 34-year-old said: “I went for a routine eye appointment in June 2017.

“The optician told me my vision was not being corrected by my lenses and he realised something was not right.

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Katie Berill with her dog Loco and oldest son Harvey, 8.

“There were dark patches that should not be there and I had quite a lot on both eyes.”

After being referred to Northampton General Hospital where she was told she might have Stargardt disease, Katie was sent to specialist eye hospital, Moorfields, in London.

In September 2017, four months after her initial appointment, Katie was diagnosed with the condition that affects only 1 in every 10,000 people in the UK, including Paralympian and Dancing on Ice star Libby Clegg.

Katie added: "I was absolutely devastated.

Katie and husband Greg.

“One minute I was fine and the next minute I was going blind and it was incurable.

“I couldn’t sleep, I wasn’t eating. I lost so much weight.

“People don’t know what to say to you. I don’t think they realise how difficult it is to live with or that there is a range of vision loss. It’s not just blindness.”

But the mum-of-two says it is great to see someone with the same condition competing in a popular TV show.

Katie said: “I know how difficult it would be for her. It is just amazing that she even considered doing it.

“I have spoken to her before and she is just so positive. She does make you feel motivated.”

Since being diagnosed, Katie has campaigned for more awareness about the condition that affects her central vision.

She said: “I put all my effort into raising awareness.

“When I was looking for ways to cope I found there weren't any support groups so I started the first UK support group for Stargardt.”

The mum also now runs a blog so other people with Stargardt can read about someone else’s experience, where she keeps readers up-to-date with how she’s doing.

Katie explained: “Mine (Stargardt) progresses everyday. I notice changes and at some point I know my driving licence will go.

“At the moment there is no treatment that can help. The only thing I can do is wear sunglasses.”

“I struggle at night and things are getting harder to read so I use a Kindle because I need the back light.

“I have also started to magnify things on my phone.

“I know my central vision will go but I will hopefully keep my peripheral vision.

“It’s difficult knowing I won’t be able to see my children’s faces and knowing that I am living with something that is only going to get worse.”

She now wants to encourage more people to look after their eye health.

Katie added: “I just wish people would look after their eyes a bit more.

“Only 20 per cent of eye conditions are incurable so it’s important to go for checks.”

You can read more about Katie’s condition on her blog Katie’s Vision.