When I was 5, (in 1961) I first noticed something different about the sight in my left eye. I could see a black dot in the middle of my site of vision. You know how kids alternately blink they’re eyes to see the overlapping vision? That’s how it began for me. I told my parents about it, and they thought I was just trying to get attention. (I have a brother who is 3 years younger than me) It wasn’t until 5 years later, during a school vision test, that I had someone to tell about my vision, who would listen to me. They did and sent me to see an eye Dr. He did tests and x-rayed my head. He gave me two different diagnoses, the first one being that I was looking at an eclipse of the sun without proper equipment. Well, my father was an Astronomer at the time and we did use proper equipment. Then he said that is was do to me being stabbed in the arm with a pencil (by the class bully) and I got blood poisoning, which I did, and it affected the weakest part of my body at the time, which was my left eye. He then said that nothing could be done for me and that was the end of that.
It went on for years with the odd change in my vision. The black dot in the middle got bigger, and the rest of the surrounding vision became blurred. It wasn’t till I was 24, married and living in a new city. I went to see an Eye Surgeon, who became my eye Dr. She hadn’t seen this before but she took good care of me. I went to see her every 6 months. Then when I was 27, something happened to scare me. At the time I was studding to be a nurse. I was on my practical training in the hospital when an aneurysm haemorrhaged. I heard the pop. It sounded like the noise made when you click you nails. My eye immediately filled up with blood. I started to panic. My eye Dr.’s office was across for the hospital, so I called her and ran over there. She took a look and was amazed. She also got her colleague in to take a look. It was then that she found the rupture and sent me to see specialists at the Eye Center at Toronto's St, Michael’s Hospital. I was injected with a solution called florazine which is a dye that they use to high light the blood vessels in the eye to see the damage. In order to do this, they inject the dye and take pictures of the retina at different angles and directions. They do this to both eyes. It was a long and teary process. I was then told the name of the disease and it’s affects on me. They told me that they could do nothing for me, and that IF they did any treatment, it would just speed up the deterioration process to were I would have an ugly looking eye and was eventually going to loose the eye. I was devastated. As a result I dropped out of nursing, and my marriage broke down as well.
Since then, I moved back to my home town with my second husband and two kids. During the past 18 years, I am nearly completely blind in that eye. I can see some light but not much else. I have near total retinal detachment, cholesterol deposits, haemorrhaged aneurysms that have caused scar tissue on the retina and a deformed cataract. Therefore, I have no useful vision. I’m in the final stages of the disease. It was miss diagnosed in the beginning, and didn't get any treatment, and I will eventually loose my eye. I have made a return visit to the Eye Center at Toronto's St, Michael’s Hospital to let them see how far advanced it is. I even had to test a couple of interns, by letting them examine my eye and make a diagnosis. Then I was to tell them what it was. They had no idea what it was and were amazed. They thanked me for letting them take a look. I kind of enjoyed the experience, and would let anyone else have the chance to take a look, if it would help others with Coates disease or Dr’s.
I have had this disease in my left eye since I was 5. I'm now 50. My present eye Dr. takes great care of me and my kids to make sure they don’t have it either. Neither of them does. My daughter is 25 (married) and my son is 19 and un-affected by this disease. I wear glasses now, bi-focals to read with and to protect my right eye.
No one can tell when or how I will loose my eye, but as long as I’m not in any pain or the eye doesn’t look deformed, I keep it. I have been searching of information on this disease for some time and not much is known about it. I have compiled what I have found to help others with Coates disease. Please click the " Coates Disease"link to read more on this disease.
Mon, 17 Jul 2006
So far, I'm doing ok, with near total vision loss. I can't see much of anything, and it feels like the eye shuts down when I'm not thinking about it. The girls at work all know about it and let me know when they are coming up on me from the left. Although, they do sneak up on me at times on purpose! It's all in good fun. Some times they stand behind me and wait till I turn around to see me jump! All kidding aside, they do know how serious it is. They ask questions etc. I've had Dr.'s ask me about it too. That is way I set up my web page. If I can help one person, I'm happy.
Friday, July 21, 2006
I guess I'm used to the surprises. Besides, I get them back. :) I try to walk on the right side of the sidewalk, so I won't bump into things or people. If I don't hear someone coming up on my left, it does scare me. I'm used to my kids doing it to me when they were little. I find my left arm gets banged a lot. I try to give myself room but sometimes if I'm in a hurry, I bang it. I'm tempted to get some padding to wear on it, or one of those elbow things Skateboarders use. What do you think? I have a hard time giving or taking things too. I have no depth perception or judge of distance. I do drive though. I sometimes have difficulty in parking, unless I practice. I'm constantly looking in my mirrors. All my life, I've always tried to compensate and re-adjust to situations.
July 3, 2008.
I went to my eye Dr. this month. He told me that I was his only patient with Coates Disease, and possibly in Peterborough (where I live). So far it hasn’t affected my right eye, but he couldn’t see much of anything in my left eye. We still don’t know how much longer I will have the eye.
