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Kylie from New South Wales, Australia

Kylie’s Story

Hi my name is Kylie and I am 25. I was diagnoised with Stargardts at 15 after long efforts of going from one optomitrist to the other. I started complaining that I was having trouble seeing the board at school in 6th class, mum thought at that stage it may have just been something that I thought would be cool to wear (glasses that is). After about a year I was still saying I could not see, so mum decided she would take me to have my eyes tested. The first guy I saw prescribed me glasses that made no difference ( I guess he thought he was doing the right thing). The second guy told my mother that my vision was fine and that she should be taking me to see a “shrink”. Poor mum, we then argued, mum was getting frustrated, what was she to do, she had a daughter telling her she could not see and the experts saying that my vision was fine.

After a long time my parents decided they would give it one last go. Mum said she would take me to Sydney Eye Hospital – if anyone was going to find something it would be them. It took about 2 years and lots of testing and they finally came up with this STARGARTDS.

I have learnt to live with it, you don’t have any choice. My hardest part is trying to explain to others what you can actually see, trying to explain that things are not blurry and that glasses cannot fix the problem.

I am the eldest daughter of three children and all my sibblings’ vision is fine. I have been the only one blessed, or should I say cursed, with this disease.

If anyone wants to talk, drop me a line at: