A Northampton mum has set up a support group for people who suffer from the same eye disease after she found a lack of help or advice in the wake of her diagnosis.
During a routine inspection in June last year, the optician found some damage to Katie Berrill's retina and urgently referred her to Moorfields Eye Hospital in London.
Doctors then diagnosed Katie, 33, with Stargardt's disease, which means she will progressively lose her central vision, making it near-impossible to read, recognise people's faces and drive.
"It was a massive shock," she said.
"Because I always had regular appointments I didn't think I had anything wrong.
"Now I know what it is I realise it was affecting me."
Katie will still be able to use her peripheral vision, but over time she will lose her central sight though she won't go blind.
Stargardt's disease causes vision loss in the range of 20/50 to 20/200 on a standard eye chart while also making it hard to see in low lighting.
Katie says the effects are as if you were wearing glasses but had a drop of water permanently on the centre of the lens.
Gradually, more and more water drops appear until eventually your central vision is completely blurry.
"It affects you so much on a daily basis," said Katie.
The stay at home mum found it difficult after her diagnosis because she didn't have anyone to turn to for help.
She didn't know how quickly her sight would deteriorate, how to deal with the loss of sight or know anyone going through the same process.
"After I left the doctors I wasn't given any support or advice, which is why I started the group," said Katie.
"It's for people in the UK to talk to others who are going through similar things.
"They now give me help and support, and tell me what things will be like."
Katie and her husband Greg have a seven-year-old boy Harvey and because Stargardt's can be an inherited disease, she took her son to the doctors to get him tested.
"Luckily he has less than one per cent chance of getting it," said Katie, who lives in Bugbrooke.
"He knows that mummy is losing her central vision and that I can find it hard to read to him at night."
Because Katie struggles to recognise people, she's also had to tell her son not to get upset if she doesn't spot him straight away after school.
There is no cure or treatment for Stargardt's and funding for research is lacking, but Katie hopes her support group could lead to fundraising events in the future as well as raise awareness of the disease.
The Facebook group can be found by searching its name UK Support Group for Stargardt's and other Juvenile Macular Dystrophies.