Isaac
Isaac was diagnosed in December 2023 at two years old, after noticing a white glare in his eye whilst taking photos of him in front of the Christmas tree. I took him to our GP the following day and thankfully they took us seriously, urgently referring us to our local eye clinic. We were seen at the clinic that same week. Retinoblastoma was first mentioned, but the specialist said there was a number of things it could be including a squint and a lazy eye, but worst-case scenario was retinoblastoma and he was not prepared to wait.
We were immediately referred to Birmingham Children’s Hospital and within a day, they had contacted me to say they wanted Isaac to attend in person that week to be put to sleep to establish what, exactly, was going. As you can imagine, this all happened so quickly and we were in a state of shock, especially with it being the week leading up to Christmas.
Isaac was seen at Birmingham by the most incredible retinoblastoma team who did everything to make sure we were comfortable and explained everything as well as they could. Isaac was diagnosed with Coats’ Disease and had his first round of laser treatment during that appointment. We were then referred back to Leeds for continuing treatment.
Since his diagnosis, Isaac had three rounds of laser in six months and currently his eye is stable. The doctors said they had never seen Coats’ Disease found so early, but he still had significant sight loss - especially his central vision. We currently have appointments every three months at Leeds and they are really pleased with his eye.
Isaac doesn’t let Coats’ Disease affect any part of his life. He goes to swimming, dancing, and practices karate. He has just started preschool, where he’s excelling! He makes us very proud of how he dealt with such a big, scary change in his life!
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?
