PABLO
I was diagnosed with coats disease when I was 14 years old. One day I noticed there was a black spot in the middle of my right eye when I would look out through it. So, I told my parents and they took me the our general doctor. Our doctor checked my eye out and immediately called a ophthalmologist for an appointment right away. She was worried that she saw a tumor.
So, we drive to the eye center place right away and saw the specialist. They didn’t know what it was either. FYI, I used to be a boxer so they thought I was losing my vision because of that. On the first day they didn’t find out what it was, so they set another appointment for the next day. This time they took some x-rays of my right eye and I saw a surgeon. After what seemed like forever, they finally found what it was. Thank God it wasn’t cancer or tumor, but unfortunately, it was Coats’ Disease. He said it was at a far stage since it was leaking but they were going to try everything they can to make my eye better.
For a whole year, once every month, I would go see the surgeon and get a shot in my right eye. It was suppose to to stop the leaking. It slowed down the process but it didn’t work. They did laser eye surgery and they did manage to stop the leaking, but I was never going to get my vision again because of the scarring. That only worked for about a year or two, then I noticed more vision loss and my eye becoming misaligned. I went to go see my doctor again and they said my eye started leaking again and there was nothing they can do since they don’t want to risk damaging my eye.
They could have saved my eye when I was younger, but the doctor misdiagnosed me and said I was allergic to tropic weather or something since I would always rub my eyes. So, long story short, this is a unpleasant disease to have and I hope you guys find a cure for this. I’m 20 years old now, and currently looking to get a prosthetic eye or a scleral shell to fix my blind lazy eye thanks to this stupid disease. So best of luck and I hope you guys find a cure for this soon !
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?
