Sue’s Story

Hi there everyone
My name is Sue Dickson and I live in New Zealand. I have had Stargardts since I was 20 and now I am the ripe old age of 45. I am married with two wonderful daughters, Teressa, aged 23, and Rebecca, aged 20, and have got three wonderful grandchildren.

I was told at the age of 20 that I had this disease and thought what and how could I get it, well I did but I have not let it get in my way as the past four years I have gone to further my education by doing a couple of certificates in the area of working with people with disabilities. I am currently doing another certificate in Rehabilitation.

I was told about six years ago that my oldest daughter Teressa is more than likely going to get this condition and she has the same attitude as me that it is not going to stop her from doing anything.

I have just recently found this website and it is great. I use a guide dog for mobility as the light irritates my eyes, I wear protective sunglasses that I got from the Foundation of the Blind over here in NZ. I use a lap-top computer with the Jaws programme in it for typing. I have a CCTv for viewing any written text. I had learnt Braille so now I can read a book without listening to someone read a book to me through a talking book machine. I get home help for my housework as I cannot see to do it anymore. I have been married to my husband Russell for the past 19 years and he has been a life saver for me as I have never been able to drive and he is also my care giver over here.

I am at present trying to get a job but when you say that you cannot see and are legally blind the employers look the other way.

I have met another woman who is older than myself with the same condition but she can see a lot more than me.

This is just a little about myself but I hope to hear from someone else soon as there is no support group for Stargardts here in my part of New Zealand .

UPDATE – added November 17, 2005
I thought that I would let you know what has been happening since I wrote to you a while ago. I have recently been bak to the eye clinic to se the eye specialist and they told me that I had to get prepared for the outcome as they told me that I am in the final stages of this disease and as I told them I have got a guide dog for mobility, which I was the first one in New Zealand to get with this eye condition, I learnt totouch type which has improved my life as I can use a computer with Jaws programme on it for speech and I can participate in studies and, as I say, you are not too old to learn and also I learnt Braille and now can read books even though when I was younger I did not read too much. So I think that I am prepared if the day comes when I cannot see at all. My eye sight has got worse as the vision in the right eye is just a hand wave which the person has to be just about half an inch away from that eye and the left is starting to go the same way.

As I said above, I was twenty when told about this condition and now am 46 years of age. I would be most interested in haveing contact with another person with this condition as it is a very lonely world out there especially in New Zealand as it is extremely rare to find another person with this condition. Please someone write back as I wrote to a couple of you on the list and did not get any reply. Bye for now.

I recently changed my e-mail address so here it is: darell374@clear.net.nz.

Sue Dickson