BETHANY

I was diagnosed with Coats’ Disease at the age of two in 1997. After a long time of being unwell, various doctors saying different things, and a noticeable glare on photos in my left eye, my parents took me to Queens Medical Centre to seek answers. Within hours, my parents were told I had Coats’ Disease in my left eye and it was unsuccessful to save the eye.

I cannot myself remember the pain or experiencing the aftermath of losing my eye. I grew up always knowing no different than having one eye. I faced comments throughout my school years, but it has made me stronger and gave me more reason to not to be ashamed! I feel it has made me the person I am today and have learned to embrace it, knowing I’ll never have two eyes. I have become more confident over the years and now finally don’t feel the need to cover it away – I am proud of what I look like!

I support this foundation and I am here for any victims of the horrible disease!

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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