Josie’s Story

(adult, bilateral cataracts)

Congenital Cataract runs in our family, my uncle had it, (although neither mum nor her other brother did) and so did his grandmother and all of her siblings. My great grandmother and most of her siblings went blind from cataracts as the operation wasn’t available, but my uncle had the operation in his early teens, when the procedure had only just started to be used on children/teens. None of my three siblings have cataracts and so it is possible that my cataracts was due to me being born two months early and not being completely developed, but its more likely to just be in my genes.

When I was young, my eyes weren’t a huge problem, I was lucky to have small cataracts, and if it wasn’t for the fact that they were right in the middle of my eyes, they wouldn’t have had a noticeable effect on me.

It was noticeable that my eyes were less than perfect, as I would walk into things and struggled a lot with glare and bright lights (photophobia) but I could manage.

I started to notice things more when I was about 9 or 10 years old. I wouldn’t be able to read small print or see things in the distance and particularly, when things didn’t have high contrast. I remember starting to struggle with reading coloured pen on the white boards that the teachers used in school, and could only read dark colours. Something that has been a problem for as long as I can remember is reading over-head projectors, as they have very little contrast.

When I started high school was when things really started to change, gradually at first and then more suddenly.

I was about 13 or 14 when things started getting worse, I would notice little things, like not being about to read things that I had never struggled with previously, or not being able to see a clear vision when light was too bright, or not bright enough.

My school were generally very helpful, my form tutor sent a memo to all of my teachers asking that they all wrote in black pen in my lessons, that I had a clear copy of sheets they may use on over-head projectors and that I had a clear or often the original copy of sheets they may have photo-copied as they rarely came out clear, often with very little contrast, along with a list of other things I may need help with.

But it was when we had supply teachers for lessons that I struggled to get these. As teenagers, when you have a supply teacher, the trouble makers of the class would try as hard as possible to get out of doing the work or to pull pranks on the supply teachers. People were always saying that they couldn’t do the work for one reason or another and because the supply teachers didn’t necessarily know about my needs it made it very hard for me to explain. More often than not, supply teachers would just think I was trying to get out of doing the work or trying to cause trouble. I remember one time getting sent out of the class room for causing trouble when I was trying to explain to the teacher that I couldn’t read the work she had just written up on the board, as it was green on white, but I had been ignored and sent out. Later, when I had been to see my form tutor, who had explained to the supply teacher, I did get an apology, but I found it hard to find the confidence to explain to teachers in the future, and often just tried to cope without.

When I was about 16, my eyes got suddenly worse, everything looked washed out and faded, I couldn’t see anything in the distance, other than a mix of colours; I struggled with reading, and needed big print. School work became very hard as I was now well into my GCSEs, I would often need to get a friend to write things out for me, bigger and clearer and a lot of the time, had to go to see teachers before lessons to remind them of what I could and couldn’t see. My high school was a big one, so teachers didn’t always remember to provide me with what I needed, as they had so many other students. I was lucky to go to a high school which had a special unit for children with disabilities, and although I didn’t use this unit for my eyes, there was always someone in each class who had an LSA with them, who could also read things out to me if I needed.

My consultant noticed the dramatic change at my next appointment at the Sussex Eye Hospital in Brighton, and put me on the waiting list to have my left eye operated on (my left eye was slightly worse than my right, and they only wanted to operate on one at a time due to starting college and A levels).

In December 2007, just after my 17th birthday, I had my left eye operated on, and had an artificial lens fitted (intraocular lens).

Since the operation, I have noticed such a huge difference, even though it’s only in one eye. I now wear glasses as my artificial lens obviously can’t focus, and its left me very long-sighted.

I can now see so much better in every situation and have realised how bad my eyes were, as I have one ‘good’ and one ‘bad’ eye I can compare my old and new vision.

Everyday I notice something else that I can now see, which I never could before and everyday I am amazed.

I am having my right eye done on the 17th July and I am really looking forward to having even better sight! Perhaps even more exciting than that, is that I have just been told by the DVLA that I can now, with my left eye being so much better, see well enough to drive. College work has become a lot easier as I don’t have to worry about writing in black, or making sure I have a clear copy of everything.

I am very grateful that I was able to have the operation, especially when I realise that only a few generations ago, I would have just gone blind, as my great-grandmother did. I also realise how lucky I am that doctors were able to operate on my eyes, with a great result.