Odiel has the eye disease ADOA (autosomal dominant optic atrophy), a condition in which the fibers of the optic nerve shrink. This causes vision to deteriorate steadily. Her father had it, and her daughter and granddaughter have it too. ADOA is a very rare hereditary eye disease that affects approximately 1 in 30.000 people. In some people, vision loss remains moderate, but others become completely blind. 

Odiel also has a retinal detachment at the bottom of her left eye. As a result, she only has a tiny bit of vision: “Say zero point that many percent. I do see some light and dark. I only have twenty percent vision in my right eye. At least when I have my contact lens in, otherwise it's fifteen percent. The disadvantage of that lens is that I cannot see close objects well, for example what is in the kitchen drawer. That's why I don't have my lens inside. I'm constantly at war with myself: when I go outside, I put in my lens, because then I can see more clearly in the distance. But when I come into a store, I think: 'Where are those socks or those cucumbers?'''

Risk of blindness

There is a small chance that she will go blind. Is she afraid of that? Odiel: "I sometimes think that it could get worse, especially since I suffered a detached retina in 2014. That was quite something to swallow. But worrying doesn't help. I was born with so little vision, I don't know any better. My father did not become completely blind in the end. I always think: time will come, advice will come. And: my life is in God's hands.'' Occasionally she is sad about it. "Fortunately, I know that after this we will have a perfect body, with perfect vision. I don't know what that is now because I've never had one hundred percent vision. So I don't know what I'm missing. I sometimes say: 'It seems very tiring when you see all the leaves on the trees.'"

I've never had XNUMX percent vision, so I don't know what I'm missing

What does worry her is if Piet were no longer there. "Then I will have lost my 'guide dog'," she jokes with her Rotterdam humor. Although she still does a lot herself, Piet helps with a lot of practical things around the house: "Removing cobwebs, cleaning the windows and removing weeds in the garden. I don't see any of that. And of course he is my driver. Without him I won't get anywhere.”

Paled optic nerve

Odiel is about six years old when she goes with her brother to the ophthalmologist, their neighbor. “It then became apparent that my eyesight was poor. I got glasses right away. I never noticed anything, neither did my mother. "You have the same as your father," said the ophthalmologist, "a pallid optic nerve." There wasn't really a name for it at the time. Later in life I ended up in the eye hospital in Rotterdam. But they didn't actually know exactly what I had. They sent me to Amsterdam and a professor there called it ADOA. At the time, only fifteen families around the world were known to have this. It wasn't until I was 45 that I found out what was wrong with me."

At the eye hospital they didn't know exactly what I had either; only fifteen families around the world were known to have this.

Because Odiel cannot see distances, she sometimes literally and figuratively bumps into things. “Grocery shopping is a drama, I have given up on that. Fortunately, it can now be done online. But something like cooking is also difficult. All the spice jars are in a fixed place and I have to arrange my cooking utensils in a very structured manner. Because I can walk past something twice without seeing it. I'm always looking for my own Easter eggs, so to speak. Crossing is also something like that. You don't hear those electric cars at all. I've thought about buying a recognition stick, but I haven't gotten around to it yet. Now I usually wait until someone else is crossing too. I often think, 'Well Lord, thank you. It ended well again.' I do have an angel with me."

Small world

Despite her handicap Odiel can enjoy nature immensely. "There are so many birds here. That chirping, beautiful. And everything is green here.'' Can she see that? "I don't see many colors, but I know: plants are green. Yes, I can see it, especially when the sun shines on it. But there are also colors that I don't see, if it is too small or far away. I don't see red and blue, nor do I see whether it is pink or yellow. So at home I have everything white. And in the garden I mainly have white flowers. It can be boring in the woods sometimes. It's all one shade of green. I don't see any leaves. That's why I prefer cycling. We have a split tandem, which is great. This way we can go anywhere. I can still cycle myself, but the family no longer trusts me. You have lost your freedom. In essence you only have a small world.”

Useful tools

“Fortunately, there are useful tools these days. I always have my binoculars with me, just like my magnifying glasses and my regular magnifying glass. I have binocular glasses for church, so I can at least see the screen and the speaker. The point is: You want to see everything, but that is very tiring. I get tired easily outdoors. I know everything inside, but not outside or with someone else. When I've visited three stores, I stop. Then I'm too tired.'' The telephone is a solution. She has a regular phone, but with a special program on it. “That magnifies everything. I can also follow everything very easily on my computer, or, for example, buy clothes online. This time is a blessing in that regard.”

'Nothing is perfect'

Daughter Dorien and granddaughter Lise have the same disease. How did she feel when she heard that? “Well, I'm very down-to-earth about it. It's very annoying, but the world is not ending! It is difficult. For me, almost all professions disappeared, because, for example, I cannot drive a car. I had always wanted to become a goldsmith, but of course that would never have been possible."

It's very annoying, but the world is not ending!

How does she experience having this disease based on her belief? “I don't have a problem with that at all. Nothing is perfect in this life. Count your blessings. Other than that I'm as healthy as a fish. And we have faced hotter fires. For example, we had a son who died. If you've experienced that, it pales in comparison. The amount of strength we have received for this is very special. I never thought God would help us like this. It just turns out that we survived because of our faith. God won't let you fall. I have a Bible verse that has always encouraged me: 'For the sufferings of this present time are not compared with the glory that is to come' (after Romans 8:18). That text has always kept me going.”

About Adoa

ADOA is a serious hereditary eye disease. A mutation in the OPA1 gene results in ADOA disease in at least 95 percent of cases. There is no treatment yet that stops or cures the condition. The Cure ADOA Foundation (adoa.eu) was founded in 2018. The aim of this foundation is to promote and finance scientific research into the ADOA condition.

Text: Daniëlle Feddes

Image: Hanneke Bouwman, hannfotografie

You can find this article in Elisabeth Magazine No 10-2023.