This article appeared in VROUW of Telegraaf.
Text: Marielle Wisse
Photo: Stef Nagel
Styling: Karin van der Knoop
Makeup: Astrid Timmer
Daniëlle Vermeulen- Boon (35) has the very rare hereditary eye disease ADOA. Her optic nerve is getting thinner, which could even make her blind. She now sees 10 percent with her right eye and 2 percent with her left eye.
I have been going to the ophthalmologist since I was three. My parents suspected that I had poor vision, but nothing abnormal was found. Doctors secretly thought that I was making it up and just wanted glasses.
In primary school my poor eyesight didn't hinder me, but in secondary school I had a harder time. The reading speed was too fast and my parents were sure that it had to do with my eyes.
When I was 14, genetic research proved that I had the eye disease Autosomal Dominant Optic Atrophy. In short, it means that my optic nerve is getting thinner and thinner, which reduces my vision. Not much is known about the progression; it can eventually lead to blindness, but that is not necessary. Some people even have no symptoms at all; about 1 in 30.000 people get it and there is no treatment that stops or cures the disease. It is hereditary; after research, it turned out that my father, sister and nephew also had it.
My eyesight has deteriorated significantly since I was 14. I can now see about ten percent with my right eye, and only two percent with my left. That is very little. I see colors differently. For example, something that is pink, I see as orange. And facial expressions are difficult. That is why I often pay attention to someone's voice, because I can hear how someone is feeling. I think it helps that I once had better eyesight. I know what something looks like, even if it is vague now.
I personally think I can see well enough to do what I want, albeit with aids. I just go out on the street by myself, I love cooking and even have a food blog. I take the photos myself, although I sometimes let my husband look at the result. I read recipes with a magnifying glass and before I add herbs to something, I just smell good. But because I constantly strain to be able to see, I am often completely exhausted in the evening. And I am not allowed to get a driver's license.
I currently work as a teacher in special secondary education. I think it's great, but I don't know how long I can continue doing it. I would hate to have to stop doing that work. Furthermore, I'm not too worried about the future. It could get worse, but it could also stay that way. The course is so unclear that there's no point in speculating. It's not life-threatening and that's much more important to me than being able to see well.
This helps
Character
My positive character makes it easier for me to deal with my visual impairment. Of course it is annoying sometimes, but there is no point in giving up. I prefer to think in possibilities instead of problems, and I prefer to focus on what I can do rather than on what I cannot.
Patients
Because my father, sister and nephew have the same condition, I never feel alone. There is always someone I can turn to when I need help or support. But now there is also an ADOA support group. I can imagine that such a group can be very nice if you want to share experiences.
Discuss
You can see from the outside that I wear glasses, but apart from that it is not clear how much I see – or do not see. That is why I always indicate that I have an eye disease. If I then sit with my nose on top of something to be able to see it, they do not think: that one is crazy! And it also ensures that people want to help you sooner.
