MARAH

Hello, my name is Marah. I am 21 years old from Bethlehem, Palestine. I was diagnosed with Coats’ Disease in my left eye when I was six years old. Luckily, it was only on Stage 2 so I was treated quickly to prevent any progression of the disease. As I remember, I was treated with injections of corticosteroids or something similar that the doctor said he made them himself. Despite the fact that he saved my eye and stopped the disease from progressing, my parents realized that after the surgery I started having exotropia. When my parents talked to the doctor, he wasn’t very helpful and thus, I no longer went to his clinic. I switched doctors and the new one performed a laser surgery on my ey when I was 13. After the surgery, he realized that the fluids collected on the retina started to disappear but the glowing bulb is still on my sight area and therefore I can’t see clearly if I close my right eye.

My case has stayed stable at Stage 2. My eye doesn’t have anything wrong from the outside except for the exotropia. It can be obvious sometimes and it annoy me, but I’m hoping it won’t get worse. Now I’m a senior at Bethlehem University studying Biology and I decided to do my seminar on Coats’ Disease since that there isn’t a lot of knowledge about it. I used to see it as a sensitive subject that I hated to talk about. Now, I’m facing a lot of problems in collecting enough information about Coats’ Disease. There are still a lot of unanswered questions about it, like why does it happen in the first place, why does it affect males more than females in 3:1 ratio, and why there isn’t a treatment for it that can save the eye and return the sight? I am searching for answers.

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.

Questions to Ask Your Doctor (Download PDF)

  • 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.

    • 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?

    • 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?

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