I am a 20 year old girl, thats right a girl! who was born with coats disease..unfortunately when i was born the doctors just thought i was born with some kind of eye infection like pink eye...little did they know I was givin one of the rarest eye diseases and especially for girls. My parents didnt notice something was wrong until I was about 2 by then I was basically having a full blown glaucoma attack...not sure which kind. I was rubbing it all the time and crying. After numerous trips to the doctors of all kinds and exploratory "visits" through my eye haha they said i did have coats disease, and that it was in such a late stage that i was going to lose all the vision in my eye..obviously my parents were horrified. I was fathers first born and my mothers 3rd child and not to mention right after she went through a miscarriage before she was pregnant with me. The doctors said that there was a chance I was going to lose the eye so if they just wanted to remove it now before it potentially would get worse or if i got older to notice...they said no. THANK GOD. (remember this was almost 2 decades ago and they didnt know literally anything about the disease compared to improvements now) because the silver lining to this cloud was that my case...as if being a rarity wasnt enough is not a typical case of the disease. I live in pgh, pa and was seen by a specialist there named DR. Chang he studied my case my entire life until i was 18 years old and left for college. My eye never detached from the muscles as they said it would..did not continue to deteriorate and in fact over time my retina has actually reattached itself...i am still completely blind in my right eye and always have been since i can remember. I never knew i was blind until i was like 7 or 8 because I haveno depth perception problems as many assume i have and other than a cataract developing (my mother calls it the star in my eye haha) it looks and acts completely normal. It moves with my other eye no laziness what so ever and I did everything that a kid with perfect vision could do. My whole life i played outside and played softball was a cheerleader (flyer) rode horses did gymnastics..nothing could hold me back. AsI have gotten older I will admit that the cataract makes me alittle self conscious because I dont like when people stare at it while im talking to them. But all my friends think it looks so cool and they think my story is amazing. I honestly go through my life forgetting im blind in my right eye all the time. I cannot see anything at all no light no color or shadows because even though the retina is attached the cones and rods are still deprived of there blood supply to function from the damaged blood vessels. I would love to be able to see completely but to be honest i feel like i would rather continue my life the way it is then risk reactivating the glaucoma that could always potentially cause my other eye to lose sight. i did develop a slight near sightedness in my left eye but nothing too serious since then. I am now at the university of arizona studying in the deaf studies program to be a sign language interpreter..After reading this site and the potential link of this disease to the mutated NDP gene i really believe that in the hopefully near future we can finally crack this mystery of this literally random disease (when i would ask about it as a kid no one could tell me where it came from, how i got it, if it was genetic, if i could give it to my children, nothing) Hopefully my case is proof that someday this disease will cease to exist or change its formalities completely. But I just wanted to share my story, because I am proud of it. Growing up with supportive friends and family has always been my saving grace whenever I would have a moment where my blindness was a small hinderence (parallel parking because they said I had to keep both hands on the wheel...but when i turned my head to the right, i couldnt see that was prob the hardest time i have had). I know that many children have worse cases and hard times with this disease and i thank my lucky stars that I was so lucky to have the rarest case of it (i love that im in medical journals its makes me feel unique!) But there is hope and i honestly believe that everyday. Everyone stay positive and it will happen. Peace and Love. <3 Hannah Murray
My son was diagnosd nearly twenty years ago and has you say little was known about coats disease then. I remember when my son was 7 one day his pupil in his coats eye just went bright red. I immediately took him to the A snf E department of the eye hospital he attended. The doctor I saw gave me an urgent appointment with his consultant who then arranged an urgent ultasound. I was told during the ulrasound that the red pupil had been caused by some of the fluid in his eye pushing some of his retina forward. I was told then that my son would lose his eye but two weeks later my sons conultant (who did not do the ultrasound) told me that my son could keep his eye and seeingpain. He is 23 now and he still has his coats eye. We where never offered treatment because they said his vessels where leaking so severely.
sorry for my mistake then. Even though things have moved on in the treatment of coats there are still too many children losing their sight and eyes to this disease and has I was told nearly twenty years ago if the vessels are leaking severely theres very little we can do and it appears that even today coats is still difficult to treat in severe cases. My heart goes out to all the parents on this site and I hope that one day more can be done to help the children suffering from coats. Even today, although my sons eye has been stable for a number of years (apart from a cataract) I still worry if the coats will return one day and if it did what impact it would have on his life because for some reason he will never discuss coats and I never try to force the issue with him. A number of years ago he saw a pyschologist and she told me it was his way of coping. I Know how hard it is because when i used to take my son to his eye appointments the doctors would be looking in his eye and commenting on how bad things looked in his eye and i just used to feel my heart sinking and i felt like saying please say something good for a change and if someone had told me during those years that my son would still have quite a normal looking eye (apart from the cataract) at 23 years old i would not have believed them. Good luck to everyone and I hope things work out right for you
