JAMES
I am a single mother with two sons and we are from the beautiful island of the Philippines. My younger son, James, has Coats’ Disease. James is 8 years old and it was only August 2019 last year (a few days before his actual birthday on the 25th), that my son informed me that he could not see anymore out of his right eye and he was experiencing a severe headache. Since we live in a small province, the best I could do for my child was to go to the nearest doctor in town. After consultation, we still needed to go to other doctors to find out what was really happening in his right eye. It was devastating seeing my son crying for help, and I felt so guilty that I couldn’t do anything for him immediately. I kept thinking, “Why wasn’t I informed of this disease when he was still a baby? Maybe I could have done something if I were aware of this in his early stage.” Every night, he cried. Every morning, he complained of his headache, and every time I saw him suffer, I felt his pain deeply.
After a few days, we flew to the capital city of our country, Manila. I looked for the best doctor who could figure out what happened to my son. Never did I imagine that he was blind entirely in his right eye, but I was still hoping that this would be fixed by the best doctor in town. We went to one of the best hospitals in the Philippines, with mixed emotions in my heart. After several tests, they finally told me that my son has a rare disease called Coats’ Disease and I heard the doctors saying there is NO cure for this disease. It was distressing, as a single mother, hearing those words. My son was suffering from this disease without me knowing and it was too late to find a cure, as his right eye was in glaucoma stage. He had an operation for glaucoma to relieve his eye pressure, hoping it would end the headache pain.
Today, he is doing very well and has no pain. As his mother, I still can’t accept the fact that he is now blind in the right eye. But seeing him as a strong boy, he always assures me that it is okay to have one eye. That he is okay because he is able to play and read a lot of books with his left eye. Seeing him strong is my strength now. I would like to share our story to inspire other children and parents that everything is possible with the help of prayers for survival, for strength, and for hope to find a cure for this 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?
