Shane
My son, Shane, was diagnosed with Coats’ Disease at 3 years old. I had first noticed that his right eye would sometimes wander to the side; it was only sometimes so it was hard for other people to notice or understand why I had concerns. My mom then took him to lunch one day and sent me a photo of him. I’ll never forget it…his eye was so noticeable, I right away followed my gut instincts and brought him to the eye doctor.
I assumed he would maybe need glasses, patching, but never had I imagined we’d walk away with this diagnosis. Shane had laser surgery on his right eye 3 months ago and it went well. However, the doctors don’t think he will regain the vision lost in that eye due to the location (in his central vision).
Shane is the sweetest boy, and you’d never know he had these vision problems. To him, it’s all he’s ever known. I will continue every day to advocate for him and help spread awareness of this rare disease. It’s the least I can do for my Coats’ Warrior!
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?
