BELLA
When I was nine years old I started noticing that my left eye was really blurry. My mom took me to the eye doctor and he checked the back of my eye and noticed something unusual going on. He sent me to an ophthalmologist, where they did a lot of tests, eventually finding there were leaking blood vessels in the back of my eye. They then diagnosed me with Coats’ Disease.
After the diagnosis, they tried laser eye surgery twice, as they where hoping this would help slow the bleeding. This, unfortunately, did not work. They then decided to try injections. It was pretty horrible. By age 10, I was getting a needle in my eye every single month. When I was 11, they told me that there was scar tissue on my eye that they needed to try to remove or else my retina would become detached. The recovery was pretty rough and I had to have my neck forward all the time because of a gas bubble in my eye that they didn’t want to be moved. I was fine after a few weeks though and back to every day life.
They let it be until I was about 14. They said there was more scar tissue in my eye that had to be removed. I was pretty sad because they had to perform the surgery again, but I pushed through and recovered after the surgery. They let it go for the next few years and, unfortunately, I lost all the vision in that eye. This means I have no depth perception and that can be pretty difficult sometimes but I’m trying to move forward and make a difference. I’m hoping that sharing my story will help spread awareness about Coats’ Disease.
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?
