CARRIE
My name is Carrie Hopkins and I am from Hagerstown, Maryland. I was diagnosed with Coats’ Disease when I was just nine years old. I was in the fourth grade when my school performed the standard hearing and vision tests. I first noticed that I couldn’t see the “barn” in my left eye. After a few attempts, we realized I could barely see anything with my left eye. My mom took me to my eye doctor and he simply said it was just a “lazy eye.” My mother brought the subject up to my pediatrician, who said that didn’t make sense and referred us to Baltimore, Maryland.
In Baltimore, we saw a few different eye doctors, but finally one told us that I had Coats’ Disease. He also said that he was unable to treat me and I would need to go to Philadelphia to Wills Eye Hospital, where I met Dr. Shields. From there, everything went pretty fast. They told me that my retina and cornea had almost completely detached due to the fluid caused by Coats’ Disease.
Over the years, I’ve had cataract removal surgery and surgery on my eye muscle. Coats’ Disease has changed my life and every day is a challenge. I have no depth perception, so when I walk, I am very careful. But I don’t let Coats’ Disease stop me from living my life! I am now 25 years old and, while I still battle with having Coats’ Disease, it has made me the woman I am today.
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?
