Seeing through the eyes of a visually impaired person
The documentary Wazig – Living with ADOA by YouTuber Nina Warink (26) from Loppersum was created as an ode to her father. He, his identical twin brother and three other family members have the hereditary eye disease ADOA. Hedy Smit-Wigchers and her daughter Kirsten from Schoonoord can also be seen in the documentary. They also have the condition, which occurs in only 1 in 50.000 people.
“Dear dad, For you, about you, through you and with you. Years of misunderstanding, searching for what you think. How you see things or not. Searching for a way to understand myself through your eyes. And those eyes work a little less, so I look a little harder.” The opening words in Wazig make an impression. Nina Warink knows no better than that her father Hans has poor eyesight. He has been rejected and still sees 7 percent. She remembers one moment when the impact of ADOA really hit her. She is at a birthday party with her father. She has been sitting next to him for a while when he suddenly turns to her, extends his hand and asks, "Have I introduced myself to you yet?" In the documentary he talks about his greatest fear: going blind.
“When I hear about that fear, I think: yes, damn it, you don't know where this will end,” says Hedy Smit-Wigchers. "I am now 49 years old and still have 25 percent vision. You have to let go of more and more things, because ADOA is not stable. I sometimes describe it as a kind of continuous mourning that you are in. My daughter Kirsten is 21 and now only sees 25 percent. At her age I still saw 50 percent. When I think about that, I find it very sad. At the same time, I don't want to anticipate misery. But going blind is the doomsday scenario.”
Smit-Wigchers, one of the directors of Wigchers International Transport in Schoonoord, was confronted with her poor eyesight for the first time at the age of 16. "The ophthalmologist told me that my vision was only 50 percent. That meant I couldn't get my truck driver's license.” As a member of a transport family, this is difficult for her. “But I was allowed to get my driving license. The requirements for this are less strict. I have always driven since I was 18. I thought: okay, I see 50 percent and that will make me 100. My vision was not an issue for a very long time.”
Struggle
Nina Warink saw her father's struggle as a child, but did not always understand it at the time. “His condition frustrated him. This documentary is an ode to him. Blurring it kind of feels like the least I could do for him,” she explains. But she also wanted to do something for the Cure ADOA Foundation, the organization that is committed to helping fellow sufferers, raising awareness of the disease and raising money for research and hopefully a treatment in the future. Warink: “Many people have no idea about this condition. I thought: how great would it be to deliver a timeless document to publicize ADOA itself? I especially hope that other people can now also see through the eyes of a visually impaired person.”
Smit-Wigchers is on the board of the Cure ADOA Foundation: "What touched me in the documentary was the story of the mother of Noël, a boy with ADOA+. She was diagnosed in hospital with Munchausen by proxy syndrome. The doctor thought that she herself did something to her child. That is why we have this foundation, to eliminate these kinds of misunderstandings. There are people who are only discovered to have ADOA after years of research.” The Schoonoord woman ultimately received her diagnosis in the Rotterdam Eye Hospital. When daughter Kirsten also turned out to have bad eyesight at the clinic, she wanted to find out whether it could also be ADOA. "But the orthoptist at the hospital in Emmen didn't want to know anything about it. I got the feeling that she thought I was just a hysterical mother.”
No victim
Kirsten Smit lives in Groningen and studies at the Minerva Academy. In the documentary, Warink paints with her. Smit emphasizes that she does not like to be in trouble because of things she cannot change. Sobriety is an asset, just like her mother. With the help of Koninklijke Visio, Smit received resources at school as a child and also help to become more assertive. “My husband and I have always taken the approach: see how it can be done. You don't want to make your child a victim," her mother says. She certainly doesn't want one thing: to be seen as pathetic. For more than ten years, ADOA has also played a larger role within itself. Her eyesight has deteriorated considerably over the years. She only drives with a bioptic telescope, a kind of glasses with a telescope lens on it. She has a large computer screen at home and at work. “My brother saw that I was sitting closer to the screen. He bought such a screen. At first I thought: oh, is that necessary? But now I'm very happy with it.”
"The biggest misunderstanding about ADOA? That you could solve it with glasses. The question 'Do you need new glasses?' I've heard it thousands of times when I was staring. But glasses or lenses correct the lens in your eye. That is not the problem with ADOA.” For twenty years, Schoonoordse was responsible for hiring new staff in the transport company. She is currently considering a new role in the company. “Because my vision is getting worse, I have to let things go again and again. You do what you can, as long as you can and when you can no longer do it, you have to let it go. That is a continuous process. But fear is a bad counselor. I don't know what's happening. And I'm also too down-to-earth to get stuck in that fear. What I like is that because of the documentary I now also receive reactions from people who understand me better. My best friend – I have known him for thirty years – said: 'I never realized that your eyesight was so bad.' It opens eyes.”
What is ADOA?
In ADOA, there is an abnormality in the so-called OPA1 gene. As a result, there is insufficient energy in the optic nerve cells. This leads to progressive vision loss because the optic nerve becomes damaged. Children of parents with ADOA have a 50 percent chance of also developing the disease. There are 500 patients in the Netherlands. In ADOA+, other body cells also suffer from an energy deficiency, and more symptoms develop, such as hearing and muscle problems. (source: adoa.eu)
Article in the Dagblad van het Noorden, written by Annemiek Meijer.
