Jeff’s Story: When I was 8, I remember playing in the front yard when one of my eyes was “blinking” without me blinking my eye. I remember being sort of scared, so I ran to my Mother and explained to her what was happening. At first she didn’t believe me, but I kept complaining that I keep “blinking.” So, she took me to the Portland Oregon Eye Institute where they performed an ultra sound on my left eye. They discovered that I had the late stages of Coats’ Disease and there was nothing they could do. Laser surgery was in its early stages in 1992 and my condition was too far gone to perform any medical technique to restore my vision.
At that point in my life, I kind of just accepted my Coats’ Disease. I wasn’t sad or scared and felt like (in my mind at the time) it was just something kids go through. It took me quite a while to adapt to not having half of my peripheral vision, but my senses have improved through the miracle of the human body.
Today, I can hear, see, taste, and sense things around me better than I have ever had. It is a blessing and a curse, but it doesn’t bother me. As a result, Glaucoma has formed in my left eye so I have two different colored eyes now. I get a lot of questions and compliments about my eyes from people I meet and people online.
I tell those who are diagnosed recently or later in life, who are too late to fix their eye… do not despair. Good things will happen to your body eventually and one should never feel ashamed or embarrassed of the way your eyes look to others. The sooner one embraces Coats’ Disease as a way of life, the sooner you can jump into an adventure of helping other parents and kids who are concerned with Coats’ Disease. Help them understand your condition and educate them that with today’s technology, kids have a better chance than ever before to cure Coats’ Disease.
One way to find out if a kid has Coats’ Disease is to use flash photography on your camera. After the photo is taken, observe the corneas and see if there is a grey reflection in the center. Looking back as a kid, I now notice how grey my left eye was in photos and can actually see the progression of that.
Parents, be aware and listen to your kids if they start complaining about their vision. It just might be a sign of Coats’ or some kind of other eye condition. Don’t wait too long and get a really good Retinal Specialist to take a look at them. My Mother was a nurse and by the time I saw a change in my sight, it was too late. Don’t ever wait.
I hope my story will help those who are worried about Coats’ Disease and maybe gave an insight to the life of living with this condition.
God bless and take care.