Sydney
I’m 31 years old and was diagnosed with Coats’ Disease when I was just four.
My mom first noticed something wasn’t quite right when I began isolating myself. In photos, my left eye had what many now recognize as “the glow.” The moment that changed everything came during a trip to see Tarzan at the movie theater. I was playing behind the seats and randomly asked my mom, “Which eye do you see out of?”
That question sent her into a panic. She rushed me to the emergency room, where doctors discovered my retina was leaking. I underwent emergency surgery to save my eye.
Although my eye was saved, I lost vision in my left eye. But I never let that stop me. I played softball all the way through college, I drive, live a full, active life, and I have a pretty cool story to tell. At 13, I had strabismus surgery after my eye began to drift, but that was just another chapter in my journey.
Now at 31, I experience floaters in my Coats’ eye, mostly noticeable at night. Other than that, I continue to live life fully.
Coats’ Disease changed part of my vision — but it never changed my determination. For anyone newly diagnosed, know that life with Coats’ is absolutely possible.
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?
