LUCY
I’m a 23 year old female living with Coats’ Disease in my left eye. I have total vision loss in that eye, but to look at me now you would never think that there is anything wrong with my eye! I’ve had Coats’ Disease for as long as I can remember and, as a result, I’ve been in and out of hospitals for most of my childhood. It’s been a struggle throughout my childhood living with Coats’ Disease. It’s been very challenging. For me, going blind in my eye is something I’ve always lived with and, therefore, really don’t know anything different, but I’ve always wondered what it would be like to be able to see out of my left eye. I know my disease is something that makes me the person I am today, but I still find being confident a challenge, as I have now a white pupil. I spend my time trying to hide myself away from it and even have a contact lens to hide my pupil. To be honest it does a good job. I’ve also had squint surgery a couple of years ago in order to straighten my eye and give me some of my confidence back.
From time to time I think why me? Why do I have to live with this for the rest of my life and there’s nothing really I can do to change it.. but it’s been a part of me for most of my life now. I still find it hard from time to time to be myself because I think everyone can tell there’s something wrong with me so I’ve spent most of my life hiding away and trying to cover my eye up. I’ve never shared my story about having Coats’ Disease but knowing other more people live with this has made me want to share my story.
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?
