Albi

It was sometime in the last quarter of 2022 when we noticed that Albi had a lazy left eye. He was only 2 years old at the time. After so many eye tests, laboratory tests, an eye ultrasound, and an MRI, retinoblastoma was ruled out and Albi was diagnosed with Coat’s Disease. I never heard of that disease and neither any of our family members. I did several researches and that’s how I got to know of the Jack McGovern Coats' Disease Foundation.  

Fast forward to today, Albi has undergone Cryotherapy (he was under General Anesthesia) to freeze the leaking blood vessels and prevent the retinal detachment. Albi is such a playful kid and he never let Coat’s affect his happy days. His doctors see him monthly to check the decrease of the fluid in the affected eye and monitor his good eye. He is also due for Avastin injections monthly. We are praying and hoping that a cure will finally be developed and formulated. 

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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