TRYSTN

Trystn’s Story:

Last year during a school physical, I got a letter in the mail that Trystn failed his eye test in one eye, mainly stating that it was a little lazy. We didn’t have health insurance at the time, and I did see it as a big deal. Well, I was on Facebook and a friend of mine shared a post about the glow. My heart sank. It had been several months since I had received the letter and I saw that glow in his eye.

Finding an ophthalmologist to even look at him was impossible. I finally found one this August! They said he was fine until they checked his retina and immediately sent us to a specialist in New Orleans, who then sent us to St. Jude. They thought it was retinoblastoma and it was the hardest week of our lives! Then being told it wasn’t cancer (thankfully!) and that it’s Coats’ Disease. I had never heard of this before and we didn’t know what to expect. I searched for doctors all in Louisiana and couldn’t find one! At that point, I was freaking out, wondering what’s going to happen to my baby?!

We found a doctor out of Houston and he has been a blessing to our family. Trystn has had two surgeries and so far they have helped tremendously, however, we have a very long road to go. He is in the third stage of Coats’ Disease borderline 3b and he has a lot of scar tissue causing the retina to not reattach.

Trystn looks like a normal kid and is very brave! He normally doesn’t let his eye bring him down. Sometimes it bothers him a lot but it’s mainly because he doesn’t understand, being that he just turned 5. I know he will do great things, even with one good eye.

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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