SHAYE
Hi, my name is Shaye and I am six years old. From around age three my mum and dad noticed I was a bit wobbly on my feet and was always tripping over. I got sent for hearing tests and occupational therapy (even physio) to rule out any issues that could be causing this. No one ever thought to check my eyes. Just before I was four, my mummy said my one eye was starting to look a little lazy. My mum took me to the GP and he said after shining a light into my eyes that it’s all totally fine. That I have red reflexes in both pupils, so if my sight was that bad I wouldn’t have that. Not to worry. Mum still wasn’t convinced so she booked me into the opticians.
The opticians saw me and said I would need to be seen at my local children’s hospital urgently by an consultant. I had no red reflexes at all and I had no sight in that eye. Within 48 hours I was sat in the eye department of the children’s hospital. They were whizzing me around, making lots of people look at my eye treating me for suspected retinoblastoma. They quickly ruled this out and explained to my mummy and daddy that I have Coats’ Disease. I had total retina detachment and no vision in my Coats’ eye. My specialist explained to my parents that I will never be able to see again with that eye. He told them to look the disease up on the Internet, as it is very rare and they didn’t have a lot of information about it themselves.
Within two weeks, I had my first lot of laser treatment along with cryotherapy. I have had a further two lots of this, along with a fluid drain and an attempt to reattach my retina. My eye has remained stable since then. However it does turn in and I have developed a cataract in my pupil now. I struggle daily with my depth perception and I become very upset when I do trip over or bump into things due to this. I asked my consultant if he could give me a new eye so I know what it would be like to see with two eyes. But he said that couldn’t be done. I always make my mom take pictures to see if I still have my yellow eye (the glow). There is a chance in the future that if my eye becomes to painful or my disease gets unmanageable that I could have to have my eye removed. We have to make sure I protect my good eye now especially during contact sports.
My mum and dad always tell me how brave I am. And how amazing I am for never giving up on trying to do the things I struggle with. We all hope that there will be a cure for people like me in the future.
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?
