BRAEDEN

Braeden’s Story:

My son Braeden failed his eye screening in kindergarten. We took him to get his eyes rechecked and was told he just needed glasses. Then, in first grade, he failed his screening again. This time I took him to a different eye doctor. She noticed that he was colorblind in one eye. I was told that was not a common occurrence, so we were referred to an ophthalmologist.

It felt like an eternity to get into that appointment. I knew there was something wrong and all I could do was cry every day that we waited. Finally, we got to see the doctor and we were then told we might need to go to the hospital for a scan. At this time, we were also referred to our amazing retina specialist. He saw my son that day and he knew exactly what was going on. My son had Coats’ Disease and his retina was detached. All I wanted to do was make sure my baby was ok, but I felt helpless.

Braeden’s surgery was scheduled for that same week. The surgery went well but his pressure wasn’t going down as quick they thought it would. Eventually it did. The following year he had to have a cataract removed which was caused by the steroid that had been injected during his first surgery. He also had a lens implant at this time.

Here we are now, Braeden is in 5th grade and he has just been cleared for another year. His retina is still attached and there are no signs anything active. He doesn’t let it hold him back from doing anything!

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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