NATHAN
I was diagnosed with Coats disease when I was 11 years old. The yearly eye sight and hearing screening at school is who tipped my parents off that something was aloof with my vision. Personally I knew my vision wasn’t great in my left eye but I was so worried about having to wear glasses that I didn’t tell anyone.
Thinking all I needed were glasses my mom setup an appointment with an optometrists. I did the vision test and failed miserably with my left eye. The optometrist immediately started to run tests to figure out why my vision was so terrible, I couldn’t even read the largest single letter on the screen. (technically my eyesight is 20/2100 or legally blind) I was ultimately referred to an Eye doctor specialist at the University of Minnesota (Dr. Knoblauch) but not before the optometrist told my mom it might be a brain tumor. Needless to say I was in the ophthalmologist office ASAP.
After taking one look at my dilated eye Dr. Knoblauch was able to quickly let me and my parents know exactly what was wrong. He also laid out the plan of action including the prognosis, which unfortunately included the fact I’d never regain my lost vision. I had 1 eye surgery and 3 laser treatments to stop the spread of the disease. This was all completed before my 12 birthday. I guarantee my whole diagnosis and treatment was harder on my parents than it ever was on me and I felt bad putting them through all of this.
Fast forward 21 years and I still have a yearly thorough examination but thankfully the disease hasn’t spread. I learned to cope with the lost vision at such a young age that I hardly even notice it today. I do wear eye protection when doing just about anything potentially dangerous, which means I was the basketball playing dork with the goggles but the fear of losing sight in my “good” eye was and is enough incentive for me to do whatever it takes to ensure I keep my good eye healthy.
I’m now happily married and in good overall health and other than the fact I can’t hit a curveball I’ve been able to fill a full and very happy life. I’ll never let losing my vision in one eye stop me from being the person I want to be and doing the things I want to do. Through the Coats foundation I hope to help other families that are struggling with this terrible disease even if it’s just as a role model to let them know you can and will live a happy life even if you don’t have perfect eyesight.
FAQ
At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.
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Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:
How do you know that this is Coats’ Disease?
Has your doctor treated other patients with Coats’ Disease?
Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.
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What Stage of Coats’ Disease is he/she in?
Will his/her vision get worse over time?
Will the eye have pain?
Will his/her eye start to turn out? Is muscle corrective surgery an option?
Are cataracts likely?
How likely is glaucoma? (due to retinal detachment)
Is there calcification?
What is the anticipated disease progression?
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Is there a thorough vision exam available?
Where is the vision affected? (central/peripheral/distance)
Does he/she have depth perception? (3D visibility)
What about the non-Coats’ eye?
To what extent is his/her vision affected?
Will we be able to use this as a baseline to measure progress/decline?
