Lucas

As Lucas got ready to start kindergarten, we scheduled what we thought would be a routine eye exam, checking off another item on the back-to-school list. At his optometrist’s recommendation, we agreed to retinal imaging “just to be safe.” That simple decision changed everything.

The imaging revealed exudate in Lucas’s left eye, and we were quickly referred to Duke Eye Center for a full ophthalmology evaluation. In September, we received the diagnosis no parent expects to hear: Lucas has Coats’ Disease in his left eye.

Since then, Lucas has faced more than any five-year-old should. He has already undergone two rounds of laser treatments, along with ocular injections, all in an effort to protect his vision. Another procedure is scheduled for March, and we’re hopeful that the swelling around has gone down.

Through it all, Lucas has been incredibly brave. What began as a precautionary exam became an early diagnosis and that early detection has given us hope. Hope that treatment will preserve his vision, and hope that Lucas will be able to see the world clearly as he grows.

Our journey with Coats’ Disease is just beginning, but we are grateful it was caught early and thankful for the care that continues to guide Lucas forward.

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?

Find a Doctor