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Julie from Nottinghamshire, England

Julie’s Story

Hi my name is Julie. I’m 39 years old and live in Nottinghamshire.

I first knew of my problem 1992 in when I had a routine eye test at my opticians. He noticed some “lesions” at the back of my eye and referred me to my GP. My GP confirmed the lesions but had no idea what they were. He referred me to a specialist at my local hospital. The specialist there also confirmed I had lesions but had no idea what they were but said as they weren’t affecting my vision (which they weren’t at the time) they would monitor me every six months. Every six months I returned for tests and got the same answer “there’s definitely something there but we don’t know what”. My eyesight started to deteriorate. Eventually, in 1995 the specialists came up with a diagnosis – Stargardts disease. I asked what could be done and the Specialist was very blunt – “nothing, except register you partially sighted”.

I was devastated. I couldn’t believe in this day and age there was no cure. I couldn’t accept it. I wrote to RNIB, Moorfields Eye Hospital and, finally the Stargardts Association who confirmed there was no cure. I received a letter from the Chairman who said he was hopeful there would be a cure within 5 years and “very disappointed” if there wasn’t a cure within 10 years. I was 30 at the time and thought “great – by the time I’m 40 I’ll be able to see – life definitely will begin then for me”.

Sadly, I will be 40 next month (July) and there is no cure. I have resigned myself to the fact that I will never see properly again. I had to give up driving, and being an independent person it has been very difficult to admit I need help with some things, and every more difficult to ask for it. I have various aids such as magnifiers, a monocular, special binocular-type glasses for watching TV, a large computer monitor at work with Zoom Text and a CCTV reader.

I have now had the disease for over 10 years and only recently have had feelings of depression over what the future may hold. I try to stay positive and not think too far in to the future but it is easier said than done.