Santiago

My name is Santiago, and I am two years old. Even though I am very small, my story is a big one.

When I was just one year old, my family learned that I have bilateral Coats’ disease, which means both of my eyes are affected. I cannot see with my left eye, but my right eye is still fighting. There is exudation in my right eye, and doctors in Chile are working very hard to protect it and save my vision.

Even with these challenges, I am a very happy child. I smile a lot, I laugh often, and I love music. Dancing is my favorite—when I dance, I feel free and strong, and my joy fills the room.

I am brave, even when things are difficult. I am surrounded by love, hope, and people who believe in me. Every day is a new day, and I continue to shine in my own beautiful way.

Thank you for reading my story. 💙

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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