Hanna
I’m Hanna, a 19 year old girl from the Netherlands who was diagnosed with Coats’ Disease a little more than 5 years ago.
When I was 14, I told my parents that I had started seeing a black spot in the middle of my vision when I closed my right eye. We went to our family doctor, but he couldn't explain what was happening and referred us to our local hospital. In August of 2019, I underwent many different tests. They had a suspicion of what was going on, but told me that I would need to go to another specialized hospital for treatment. When we finally got to the right place - The Radboud UMC in Nijmegen, Netherlands - I was diagnosed with Coats’ Disease in my left eye. A surgery was planned at the end of 2019 but, sadly, we were too late. My retina had suffered great damage because of too much liquid behind it. The surgery had become too risky, and my treatment had just become much more difficult.
In the past five years, I have had 5 surgeries and countless laser appointments to treat the disease. Unfortunately, it has remained unpredictable and the damage to my retina has become irreversible. My treatment is currently focused on stabilization.
It has been hard to deal with this disease because of the little amount of knowledge around its development and treatment. The hardest part is how difficult it is for others to understand how much it affects me. I see flashes of light multiple times a day and have lost half my vision in my left eye. The eye is one of the most sensitive and important parts of the human body, and one not working can really take a toll on you physically and mentally.
My family, friends, and amazing doctors have made the experience as good as can be. The Jack McGovern Coats’ Disease Foundation website and reading about other patients have helped me to not feel alone. It gives me hope that at some point, a treatment will be found and future generations will benefit. Thank you for doing what you do, its amazing.
Greetings and much love from the Netherlands!
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?
