Nora
My daughter, Nora, was diagnosed in the summer of 2024, but our journey actually began in April of 2023. Nora had headaches and when the doctor checked her eyes, we learned that she had problems with her vision. We were sent to an optician. At the optician’s visit, they found something in her pictures and sent Nora directly to the hospital. We were told it could be a number of things – Lyme disease, cat scratch disease, and they even wanted to check to see if she had a brain tumor. At the hospital, we were sent home and had to return at a later date for a spinal cord test, MRI scan, and a lot of blood tests. None of them showed any of the above. It was a big relief, but we were still worried because we didn’t know what had caused these changes in her right eye and was giving her headaches.
From April of 2023 until May of 2024, Nora went to the hospital every 3 months for a check. They told us it was a virus and that time would cure her. But every time she went to the hospital, her eye had gotten worse. On our summer holiday, Nora had a lot of headaches. We also noticed that she often closed her right eye and she was complaining about seeing green and purple colors. So, when we came back to Denmark we called the hospital for a quick appointment. At that appointment, we learned that Nora’s right eye had deteriorated so badly that she only had 8% of her vision left and she was diagnosed with Coats’ Disease.
Nora just had her fourth injection in her right eye and I’m so proud of my brave little girl! Not once has she complained about anything. When it’s time for full anesthesia, she cooperates and smiles to the doctors. In January, it will be time for her laser treatments, where we will find out if the treatment has worked.
Of late, Nora has not had headaches and is a happy little girl. She has never mentioned her loss of vision in her right eye and wears her glasses without complaining. As her parents, we notice little things have changed. For example, she doesn’t want to use her bike since this started because her balance isn’t the same as before. We were told it could be because of decreased distance judgement, but in time her brain will get used to it. Besides that, we never notice anything. Our biggest worry is if the treatments will work or if her eye will become more damaged 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?
