ELI
On September 1, 2021, our lives got turned upside down. My husband and I were talking in the morning and we both had mentioned that we were seeing a glow or white light in our 18-month-old son’s eye lately. We knew we had a pediatrician appointment for that afternoon and we figured we would bring it up then. As the morning went on and we started to Google the glow, we realized this could be a much bigger problem. We called a few optometrists until someone could see us that day. He referred us immediately to Dr. Shields at Wills Eye Hospital.
Our first appointment was September 7 and our EUA was on September 15, which gave us Stage 4 Coats’ Disease with a total retinal detachment. On September 23, Eli had an enucleation of his eye. September flew by so fast, we barely had time to process what was happening. We had never heard of this disease but we were so thankful for this Foundation to have all the information readily available. Eli is 3 weeks post-op and he is doing AMAZING! He is a fun 19-month-old little boy, always on the move, and trying to keep up with his two older brothers. The enucleation did not slow him down – if anything it probably relieved some pain that we didn’t know was there. We are so grateful for all of the support we have been given from our community during this time. This ordeal was much harder on us as parents than it was on little Eli. He is a true superhero to us!
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.
-
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?
