LUKE

I was diagnosed with Coats’ Disease in my left eye in third grade. I immediately went in for cryo-surgery. I have heard from the doctor that you can tell from old photos if you have issues by the reflection…around Kindergarten, old photos showed that mine reflected back yellow instead of red.

Years after successful surgery, I was diagnosed with Coats’ Disease in my right eye during my sophomore year of high school. Still to this day, I’ve never personally met anybody else with bilateral Coats’ Disease.

I fell into a state of depression and started learning stringed instruments. From there, I transferred to Indiana School for the Blind and Visually Impaired (ISBVI). After high school, life was rough and lonely without all my blind friends from around Indiana.

I’ve had many flare ups and surgeries since my graduation in 2010. But, laser surgeries, injections, Cryotherapy, and a Vitrectomy couldn’t keep me down! I found some good friends, started up a band, and now I travel around and entertain crowds of people for a living. All without seeing their faces.

I wouldn’t change anything for the world. I am 32 years old now and my eye/eyes are actively flaring up.

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.

Questions to Ask Your Doctor (Download PDF)

  • 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.

    • 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?

    • 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?

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