LUKE
“I was diagnosed with Coats’ disease when I was 5. Soon after, I developed pressure buildup to such a painful degree that removal of my eye, or enucleation, was necessary. The thought of enucleation was much worse than the reality. For me, the surgery was the answer to the end of horrific pain. When I awoke from the surgery, the intense pain had ended.
After 6 weeks, I was fitted with a prosthetic eye that I have worn continually for more than a decade. I have competed on basketball, swim, and football teams and was ranked 1st in the state my entire senior year as a 160-lb.varsity wrestler. My prosthetic eye has never fallen out or inhibited my athletic endeavors any more than being blind in one eye would;honestly, I rarely think about it. I cannot feel my prosthetic eye at all.
No one has ever asked if there was something wrong with my eye or looked at me like there was something that seemed unusual. People are always shocked when I tell them that one of my eyes is prosthetic. When I was younger, new friends would ask me to take my “fake eye” out. It was always the same: my friend would act excited as he waited for me to remove my prosthesis, only to quickly become bored once I did so when all he saw was pink tissue similar to the inside of a cheek.
When you think about it, we all have something about us that is different or that we perceive as different. Most of us have insecurities that may threaten to hold us back. There was a time when my upper eyelid began to droop, and I felt insecure about it, but eventually, the droop was improved by surgery. Certainly, my inability to see out of my left eye is a loss that only those whom have experienced it can fully understand. You may face more challenges than I could ever fully appreciate; however, if your doctor recommends enucleation, there is a very good reason. Educate yourself, but don’t let fear hold you back.
I am very thankful for the gifted surgeon whose skill ended my left eye pain and provided superior mobility of my prosthesis. I am appreciative of my ocularist who crafted such a naturally fitting prosthetic eye. In any situation, there is something to focus on that is positive. Sometimes that is the best medicine of all.”
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.
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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.
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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?
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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?
