My name is Jeffrey. My Coates was discovered in 1978. I have been through many, many numerous laser treatments, and exams with my right eye. I am now 38, married with kids. Growing up, I participated in full contact sports lettering in H.S. I received an athletic scholarship to attend college. I hunt, ride motorcycles, anything I chose to do. I have worked in the live entertainment field for 17 years now as a lighting designer and made a nice living based on my vision. My current vision is 20/15 L and 20/175 R. One of the best things my family did for me was to not let this define me. I want to encourage you to realize this is not the end of the world for you or your children. Medical advancements have come light years from when I first started. Kids can cope better than you think. Life can be great if you let it. God Bless.
Jeffrey, I cannot agree more. I was diagnosed with Coat's in 1985 at the age of 7. I had cryotherapy on three occations and later laser on two occasions as thecnology advanced. This never stopped me from doing what any good South African kid would do, rugby, cricket, tennis and karate. My parents never made it an issue. They always encouraged me to live life to the fullest and looking back I cannot thank them enough.
The disease slowed and halted and for 20 years my sight remained stable. Then suddenly it worsened, almost overnight I developed a cataract and a year later gloucoma. This was hard for me to accept, and the discomfort was not easy to life with. I tried for two years to life with the constant pain and discomfort and in the end I could not drive my vehicle anymore and this limited my working capability. After carefull consultation I decided to reclaim my life and had an enucleation with evisceration procedure performed.
I now have a prosthesis in my left eye. No one has any idea that I have a prosthesis in my left eye and on the occasion that I do tell someone the do not believe me:)
I am a soon to be professionaly registered civil engineer and had two bursaries through my study career and obtained my last degree with a first class honours.
The Lord will Bless you and your child in some other way.
hi Jeffrey, so glad to hear you have lead such an active life, and coats hasnt stopped you. Our son who has just turned 3 has just been diagnosed with coats, and he is very active, as a family we are all into our sports, running, triathlon and football, our son has always been full on 100 mile an hour, so when I first noticed in our photos his right eye kept having a white glow, I had it checked out 3 weeks ago and found out his right eye is more or less blind due to coats, we were devastated, but it has not affected him in any way, we would of never have known if it was not for the photos!! Reading your story has made us feel better. All the best for the future!
Jeffrey, You have said the magic words, let the child do what he wants, do not let the coats define him. I know, I was diagnosed with coats in about 1956 yes 1956, I was 7 years old and there then was nothing you could do for the treatment of coats. My parents, God bless them, let me play baseball and football, later I went on to college and got my degree, in accounting no less, and have worked in my field in one way or another with my good right eye for close to 40 years. I have piloted a small plane, snorkled many many times, and take my life in my hands every day by driving to work on the Los Angeles freeways! 8-)! All kidding aside, you have given very good advice, and I second it.
Best Regards to you and all who read these entries
