Ethan

My sweet little boy came inside one summer day in 2020 saying something got into his "good eye." This little remark was the curveball that ultimately led to a surgery and countless appointments over the last few years.

The path to diagnosis was scary, with Ethan describing the "black dot" in his vision, failing eye tests with the optometrist, and watching the doctors exchange glances as they said they see a "mass" and writing an immediate referral to Texas Retina. The problem was that only a few doctors will see children, but we were scheduled with Dr. Ashkan Abbey the next day. After what is now our new normal of poking and prodding, scans, drops, a dye injection, and pictures, he was diagnosed with Coats' Disease and surgery was scheduled. 

I went home relieved and equally concerned. We spent several weeks trying to find as much information as possible. 

Recently, we had a positive visit at Texas Retina Associates of Dallas this October and get to keep our "every 6 months" checkup appointment compared to the every 3 weeks he was on that first year. After the initial surgery, he had 2 additional injections to dissolve the leaking fluid, and has been in stable condition for a year, officially.

In all honesty, I think this disease is harder on me, the lack of answers, the guilt, the research, the unknown. He simply enjoys the promise of Chick-fil-A after every doctor visit.

Luckily, this has not slowed him down but it is something we will manage and monitor as best we can. This is just part of our journey now and Ethan is a happy 5th grader, enjoying his giant puppy, playing piano, and playing video games 

I appreciate organizations like the Jack McGovern Coats' Disease Foundation to provide information, an outlet, and a voice. 

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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