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Hi there. My name is Sally. I am 32 and I have been living with Stargardt's Disease for 25 years. There is no history of eye trouble in my family except for my grandmother on my mother's side who had age related Macular Degeneration. I have a twin brother and an older brother who are both unaffected (for which we are very grateful). So the assumption is that mum and dad both have the recessive gene.
I am South African, born and bred in beautiful Cape Town, and my family still live there. I left Cape Town when I was 18 to study Physiotherapy in the UK. Universities over there offer far more support for visually impaired students than ones in South Africa can offer. I lived and worked in the UK for 7 years when I left in search of sunshine (ironically the thing I love the most offers the biggest threat to my vision!), and I have now been living in Sydney for 7 years.
I have a wonderful job at a hospital in the city working as a Physiotherapist specialising in Neurological Rehabilitation. I became an Australian citizen in 2007 when I linked in to Vision Australia. Their support has been overwhelming and I am now set up at work with CC TV's, Zoomtext, magnifiers etc. They also arranged for me to apply for a free public transport pass and half price taxi's which has been of huge assistance to me seeing as I find not being able to drive very frustrating. My family and I have been blown away at the support offered in this country as South Africa is somewhat behind with assistance for those with disabilities. Whilst I find it very challenging being away from my country and my family, the infrastructure and support systems here mean that life is made a little easier for me.
My parents first noticed that I wasn't seeing things that I should be seeing when I was 6 years old. My mum pointed out some dolphins in the surf and I could not locate them. At the same time my teachers noticed that I could not read the blackboard from the back of the classroom.
My parents took me to see an ophthalmologist in Cape Town and the tests were inconclusive. Doctors thought that I may be attention seeking. I underwent more tests including the flourescein angiography and I was eventually diagnosed with Central Cone Dystrophy. We were told that my vision would decline for a period and that it would then plateau and stabilise. My vision declined rapidly over my 7th year and it then seemed to settle.
I remember this being a very difficult time for my parents but at the age of 7 I didn't understand what was happening and what the long term implications would be. I remember having a terrible time at school for the next few years. Teachers did not understand and thought that I was attention seeking and kids were mean. I went from being top of my class to being very average which was very difficult, especially as both my brothers were straight A students. I remember (and to this day I still experience) the frustration of knowing that I am a quick learner and I have good understanding, but not being able to get information in.
I visited Moorfields Eye Hospital when I was living in London and they informed me that I have the third type of SD being the one that affects the periphery as well. I think I already knew that this was the case because I had noticed deterioration after the doctors informed me that my vision would stabilise. This has been one of the hardest things for me to overcome mentally. I sometimes wonder if they had told me that it would continue to progress that I would be better prepared for the outcome. But then again, we were probably not ready to hear that then and it has worked out for the best that I have been forced to take one day at a time. I do however think that my folks still hold on to that original diagnosis that things stabilised a long time ago and that they are in denial that it continues to progress, so I don't talk about it much because they get upset. I think it may be harder for the parents than it is for the sufferer at times.
I am now registered legally blind and I don't see much at all. I live on my own and I still get around independently but if I am in unfamiliar areas, on uneven ground or in the dark, I do need a hand. I am able to do most parts of my job though I have had to adjust my practice in some ways. I read everything with CC TV's and Zoomtext, and I listen to audio books. I still run though I think those days are numbered as I have had some accidents recently. My friends and my colleagues here are my angels and their subtlety in assisting me allows me to sometimes even forget that I can't see.
The things that I find the most difficult as an adult are not being able to drive, not being able to read for my job and for leisure, not being able to play sport, and most of all, the social aspects of not recognising people, telling boyfriends, not being able to put on make up, and generally just being different and misunderstood.
I have had lots of professional support to deal with the emotional and mental aspects of living with this disability and I am now at the point where it is just me and I am just how I am meant to be. I have developed compassion and depth that I don't think I would have experienced without it. Yes, there are much worse things out there (spending a day on my ward is very sobering!) and we do have a lot for which to be grateful, but sometimes it would be great to be totally uninhibited and to just say, THIS SUCKS and I wish I didn't have it!
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