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Vaughan from Sydney, Australia

Vaughan’s Story

My name is Vaughan. I am 52 years old and I live in Sydney, Australia. I have had Stargardt’s disease since I was 8 years old, but I did not know it by that name until very recently. I knew my condition was “Juvenile Macula Degeneration” but when I changed to a new optometrist recently, he told ne I had Stargardt’s disease which I had never heard of.

When I read the description of the condition on the web, I realized that this certainly matched my history and symptoms. I recall when my parents took me to have my eyes tested, that the doctors thought it was psychological and sent me to a “shrink”. In time, of course the damage to the retina became visible.

Since I have had this condition for 45 years, I have learned to live with it. I find it annoying and inconvenient rather than a tragedy. I wish I could drive a car and I get a bit tired of having to use visual aids to read most things. It did not hinder me much through high school, but I had some difficulty at University when overhead projectors were used.

I was fortunate enough in 1972 to obtain a scholarship offered by the Australian Computer Society which enabled me to gain a Diploma in Computer programming. People with computer programming knowledge were rare in those days and so I had a good career path. In 1983, I set up a company to duplicate floppy diskettes which has now developed into a company producing CDs and DVDs.

My vision loss has progrssed to the usual limit for this disease. It has become worse in recent years as my eyes have naturally deteriorated with age. I have never let it get me down or depress me. I can function in a world of people with normal sight so well that many of the people I deal with do not realize that I do not have normal vision. None of my 4 children have the disease, but they seem to enjoy helpng their dad negotiate unfamiliar terrain such as steps and gutters.

Update (September 2005)
In June this year, I travelled to the US from Australia to try the Echo therapy. This has improved my vision slightly and I am convinced after speaking with Dr. Nolan that it is much more effective in younger Stargardt’s patients.

After much discussion with doctors, governemnt and pharmaceutical companiesm it is now possible for this to be available experimentally to people in Australiua with Stargardt’s. If any Australians wish to know more about this, please send me an email.

Update (April 2006)
I am happy to announce that your website inspired me to set up a website specifically for Australians with Stargardt’s Disease. The address is:

If you would like to correspond with me, my e-mail address is:

Vaughan Hillier