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Sue's Story

Hi there My name is Sue Dickson and I live in the South Island of New Zealand. I was told at the age of twenty that I had something wrong with my eyes and that there would be test to see what was wrong, even though I was Twenty when I was first told of this eye condition.

I asked the specialist what it was and how it would affect me and my having children and she replied saying that it was a rare eye condition and that it would take away my central vision and leave me with my peripheral vision and that my children when I decided to have any would not inherit it as there was no family history of it. I know that children can get it within a certain age and they could not work it out whyI got it at the age I was.

I was also told that I would never go blind but now after twenty seven years of the disease I have lost most of my sight, I had an operation on my right eye to get rid of what the medical professionals call Floaties and was told that the operation had side affects to it but I took the chance and it got rid of those floaties but it did take away a bit of what sight I have in that eye so now I can only see a hand wave out of that eye and the left eye is just about as bad as the right one.

I have two daughters, Teressa who is turning 25 this year and Becky who is 22 now and they both had the test which can be done here in NZ at a young age and was told that Teressa had a high chance of getting this eye condition but just last year she went back to the eye clinic and was told there was no chance of getting it and the youngest daughter has no chance of getting it and as they told me she has got text book eyes so that gave me great relief when I found out that they did not inherited it from me.

I was told many years ago that I could go blind within two months up to twenty years and that did not worry me but only two years ago I was told to get prepared as I was in the final stages of the condition and that scared me but I thanked the specialist for being so honest with me as for many a year I wanted answers but they could not give me the right answers and now I can prepare myself for the next stage. I go to the eye clinic every six months for checkups and I know there is nothing to be done but it just reassures me and every now and then I am rung up for their teaching clinics which I enjoy doing as that is the only way students can find out about things.

I tell people when they asked me how much I can see and I tell them what they can see at three feet I can only see at half an inch and they are so shocked but I also tell them that there is worse people off than me.

I use a computer with the software called Jaws which I can not be without now as I rely on the computer everyday for E mails and doing my studies on, use a guide dog for mobility which I was the first one in NZ to get a Guide Dog with Star Garts and now there is a few guide dog userswith the eye condition  here now, I did use a CCTV for reading but sold it a few years ago as my sight got worse and could not focus on it, learned Braille seven years ago which is good now because I can read books, got taught daily living skills for the home so as you can see I have done preparations to cope with the sight getting worse.

Over here in New Zealand there is not a site like this which I wish there was as having someone that you can talk to about the things that are happening to you is extremely important and as this eye condition is rare here I only know about five people who are older than twenty that have got it. I have contact with a few others in other parts of the world through a web site like this and they can contact you through E mail and that to me is important. In closing, I would just like to say to those parents tell your children that they can do anything with their life and no matter what barriers are put in front of them just to go forward and break those down and show people that nothing is going to stop them from doing what they want.

Thanks for the opportunity for allowing me to write my story on this site If anyone wishes to contact me feel free to write to me as I reply to any e mails that I get. My E mail address is : darell374@clear.net.nz Look forward to hearing from others Cheers for now.



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