JACOB
On May 6, 2015 we welcomed beautiful twin boys into the world – Jacob and Elijah. About 6 months later, we started to notice Jacob’s right eye was drifting. Thinking it was a lazy eye that just needed to be patched, I made an appointment with the ophthalmologist. On December 7, 2015 at what I thought would just be a standard eye appointment, the doctor informed me that Jacob’s retina had totally detached and he is permanently blind in his right eye.
At first the fear was that the retinal detachment was caused by retinoblastoma (an eye tumor) but after months of tests they were able to rule any malignancy out and he was diagnosed with Coats’ Disease, which was a tremendous relief.
Jacob is now 3 and you would never guess he is blind in one eye. He wears protective eyewear to keep his left eye safe but other than that, he is runs, jumps, and plays like any other little boy. We give him eye drops daily to keep the inflammation and glaucoma under control and one day his eye may need to be removed but we are thankful everyday for our perfectly imperfect little man!
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?
