AVERIE
My daughter, Averie, was diagnosed with Coats’ Disease at the age of four. I noticed that there was a glare in one of her eyes when I would take her picture. I came across a Facebook article that gave the warning signs for eye conditions related to the glare. I decided to take my daughter to the eye doctor just to be safe.
I visited an optometrist first. He noticed a mass behind her eye and the first thing that came to his mind was Retinoblastoma. He had never diagnosed it before so he wanted to refer her to an ophthalmologist to be sure. Same thing happened with the ophthalmologist — she thought it was Retinoblastoma as well, but didn’t want to diagnose it. To add to that, I discovered that Averie could not see out of her right eye. She referred us to a Retina specialist in Birmingham, AL. He saw the mass and the first thing he said was, “Well, it’s not cancer!” He diagnosed it as Coats’ Disease. I had never heard of it.
Averie went on to have laser surgery and cryotherapy. She’s eight now, and while it’s unlikely that she will regain vision in her right eye, it hasn’t slowed her down! She’s a straight A student and she takes dance lessons. Hopefully a cure can be found in the near future!
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?
