URIEL

Our journey with Coats’ Disease began in May of 2018. I had started noticing that my son’s eye would wander off, so I immediately took him to his pediatrician and she referred me to an eye doctor. The wait to get into the eye clinic was two months, as was the case for most of the children’s eye clinics where we live. I started noticing something weird with my son’s eye (he was only three years old). When the light hit his eye, it started looking hollow in the middle, which I though was very odd. I just happened to take a picture one day and the flash caused his eye to look yellow in the picture and that’s when I noticed the “glow!”

At first, I thought it was just the angle of the camera when it flashed, but it started coming out more and more. I immediately called the eye doctor and demanded an appointment sooner. After a week of fighting, they finally brought him in.

During the checkup, the first thing the doctor said was “uh oh.” This was the worst thing I could hear as a mother, as I had done the research and I knew it was one of two things – Coats’ Disease or retinoblastoma. After the evaluation, the doctor determined my son had retinoblastoma, although this was not a diagnosis I was going to take without a second opinion.

I went for the second opinion and that doctor sent us for an MRI. It was determined that my son had Coats’ Disease. Our insurance gave us a referral to see Dr. Emmanuel Chang in Houston, TX. Only then did I truly know how bad it was! My son was already in stage 4b. His retina was completely detached and Dr. Chang immediately scheduled him for surgery! His first surgery was on July 3, 2018, and went very well. We have had checkups ever since with the help of another retina specialist here in El Paso by the name of Dr. Dinesh Bahl. He and Dr. Chang have been working very closely together with my son’s case, so we didn’t have to travel to Houston as often as every month. My son, however, has lost complete sight in his left eye and from what we have been told, it is possible that his sight may never come back. The race now is to just save the eye!!

He was doing very well until October 2018, when, at a visit with Dr Chang, we were told his retina was detaching again and there was fluid once again. My son had his second surgery, where this time they did a sclera buckle. It was painful for him this time around.

Uriel had his last surgery on May 24, 2019. At his follow-up appointment in November, we received confirmation that his eye is currently stable. Coats’ Disease has, unfortunately, left him completely blind in his left eye, but I am just happy that, as of now, he’s stable and the follow-up appointments are now every six months instead of every month.

I thank Dr. Chang for everything he has done for Uriel and how quickly he responds back to any questions we may have. I truly hope one day we will 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.

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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