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Ruth from Isle of Wight, England

Ruth’s Story

My name is Ruth and I live on the Isle of Wight, a small island on the Southern coast of the UK. I am a 28 year old mother of two, and I have lived with Stargardt’s for 20 years.

At the age of 8 my parents realised that there was something wrong with my vision, I began holding books close to my face, and became unsure about judging distance, so they took me to the optician. Unfortunately my condition was in its earliest stages and was missed, I was prescribed glasses and sent away. I spent a further year going to different opticians but with no success, no one could understand why the glasses did not make any difference.

Eventually after a very traumatic appointment with a ‘specialist’ my parents were informed that there was absolutely nothing wrong with me, and that I was attention seeking. I was sent to a Psychologist and was labelled as a difficult child.

Fortunately my parents sought a second opinion and I went to the hospital in Southampton where I under went numerous tests. However, it only took a brief eye examination to diagnose severe damage to the back of my eye. We were told that I had Macular Dystrophy, that it would probably get slightly worse and that it could not be corrected, at this stage I was 12 years old.

I stayed in a normal school, and achieved very good exam grades despite little support from the school. I had spent 4 years being told that there was nothing wrong with me, and in that time I had learned to cope by myself in the classroom, this meant I never asked for help which I regret with Hindsight, but at the time I just wanted to be like everyone else. I attended regular yearly appointments and just got on with it.

My sight has deteriorated over the years so that I now have less than 6/60 vision, I am now registered as blind, but I still have most of my peripheral vision and manage to live a normal life with very few visual aids. Fortunately the deterioration of my sight has been so slow that I have adjusted over the years and cannot really remember it being any different.

My husband is very understanding and supportive. However, I cope so well that he often forgets that there is even anything wrong. I also owe a huge debt of gratitude to my best friend Helen, who in the last 20 years has read from the blackboard, helped me across the road, stopped me walking into lamp posts, and been a shoulder to cry on. Although Helen no longer lives locally we are in daily contact and I often wonder how I would have got through without her.

I was always told that my condition was caused by a genetic freak of nature and there would be a million to one chance that I would ever pass it on to any children. However, on a routine annual visit 2 years ago I was seen by a new consultant who re-diagnosed me as having Stargardts Disease. I am still unsure of the chances of me passing the condition on , and this is a worry to me as I already have 2 small children.

I have lived with my eye condition for most of my life and now totally except the fact that it is part of who I am. I no longer feel bitter or angry, and just take things in my stride, but i am concerned for my children. They are only 3 and 4 years old at the moment and are too young to test. Do you know anyone else who has passed Stargardts to their children, and whether there is a genetic test they could have?

I have never spoken to anyone else with Stargardts and would love to hear from other sufferers, I do not have much medical knowledge about the disease, but I do have a lot of experience of living with it, which I would gladly share.

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