JESSIE

So, after 16 years of being diagnosed with an eye condition, I’ve finally decided to share my story.

I was very ill at just two-years-old and wanted to sleep constantly. I was taken to London Hospital where I was told I had Coats’ Disease after many tests and finding out my eye pressure was extremely high. Since then, I’ve had an operation on my eye, as well as constant trips to Brighton Hospital and Conquest. I started wearing a cosmetic contact lens to cover the eye at just age eight because of the comments I got on the appearance of my eye. I remember feeling very insecure about myself and wondering why I didn’t look like everybody else. Being worried about what people think about you isn’t what someone should be thinking at just 8-years-old!

I can’t say life has been easy living with something like this, with constant eye infections and excruciating pain, as well as being anxious and depressed from a young age because of it. But, I just remember that people go through much worse.

Today, at 18-years-old, I have just learned that I am who I am. I once got asked a question, “if you could change something about yourself what would it be?” And I always used to reply “I’d change my eye, I hate it.” But I thought long and hard and realized, “You know what? It is who I am. Without it, I wouldn’t be the girl I am today. If it’s taught me anything it’s to appreciate what you have in life.”

Coats’ Disease isn’t made aware of enough and by sharing my story I really hope to help other people out there suffering with the same thing. It isn’t easy, but it definitely makes you a stronger person!

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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