CHARLES
My son, Charles, was diagnosed with Coats’ Disease when he was one year old. He had a pediatrician visit for his one year check up and they did a vision test, which showed his right eye wasn’t aligning correctly. They thought it might be a lazy eye and referred us to a pediatric ophthalmologist, who thought it might be a lazy eye. We began to notice when we looked at him at just the right moment his right eye would turn outward. We immediately knew something just wasn’t right.
We got a second opinion and they suspected it might be Coats’ Disease but wanted Charles to see a Retinoblastoma specialist to rule that out. We were then told it was for sure Coats’ Disease and not Retinoblastoma. They told us he was Stage 4. We were then referred to Dr. Karl Olson at Retina Vitreous Consultants in Pittsburgh. Dr. Olson confirmed he has Stage 4 Coats’ Disease after he had an EUA (exam under anesthesia).
Charles retina is fully detached. Charles has had many exams under anesthesia with laser treatment and one drainage surgery. Charles is a very resilient little boy. He never lets anything stop him. We love his glasses – he looks adorable!
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?
