Dear fellow sufferers,
In the section that follows, I will share my experiences with adoa+. TWhen I was about 45 years old (1989), I went to the ophthalmologist in Amstelveen for my six-monthly check-up. At the end of the consultation, he asked if I had any questions and I said that my vision was also poor with my glasses on (I am nearsighted). He immediately replied that my optic nerves were dying and that I would slowly go blind.
He immediately added: “See you in six months” and brought it me to the exit. I stood outside again, dazed by this unexpected announcement. I had not had the opportunity to ask questions and tried to forget it, but I often thought about this puzzling remark. After six months I of course came back to it.
The ophthalmologist then said that this condition occurred in several of my family members and also in my mother. He wanted to get his PhD, but since my mother did not feel like doing all kinds of research (she was about 83 years old at the time and had dementia), this was canceled.
A few years later we moved to Hoofddorp where I saw an ophthalmologist who immediately mentioned the name of my condition and said that he knew something about it because he had assisted a couple who had done research into it. During my next visit to him, he asked me if I would like to participate in a color test. Of course I wanted that and I learned that I had arranged the colors incorrectly exactly according to the book. According to this introverted doctor, who was now almost cheering with joy, this proved that I was color blind and had (A)DOA. He also told us that the Normans had brought this condition to the Netherlands a long time ago and that most patients live in Katwijk. I still knew little about it and so did the ophthalmologist, as it turned out. When I got an iPad and was able to look up what (A)DOA does to your optic nerves, I understood I like it a little more.
Years later I looked again and saw that there is also a DOA+. When I read about it everything fell into place. I suddenly understood why I was falling over so much, why my hearing had become worse, why I often choked and had difficulty pronouncing difficult words in the evenings and also had neuropathy in my feet, legs and hands. And then I suddenly remembered that my mother, who passed away in 2000, also suffered from all these things. But at the time, we didn't even know the name of our condition, let alone the symptoms.
It was nice to understand why I have these symptoms, but also scary. I saw myself sitting in a chair in 10 years' time: Blind, deaf, unable to speak, eat, move, etc. Not a pleasant prospect! After a few gloomy days, I gave myself a stern talking to and resolved to live in the “now”. No one knows what the future will bring, and neither do I. Maybe it won't all be so bad.
The ophthalmologist who did the color test has now retired. In the years before that, I always informed him of the facts that I found out via the internet. He was always very interested in that. I was also examined for half a day at the AMC. These tests also showed that I most likely have (A)DOA.
In recent years I have increasingly felt the need to meet fellow sufferers. I was told to go on Facebook. I never wanted to do that, but I did it anyway. The next day I had about 200 friend requests from people I don't know at all. I was scared to death and quickly got off.
A while later I suddenly had the inspiration to call the eye association. They gave me the telephone number of the secretary of the adoa peer group: Cure ADOA Foundation. I called immediately and got Gabrielle on the phone, who told me that she did too adoa+ and that few people have this plus. I was so happy to have finally found a fellow sufferer and someone who also has a plus! At the same time, I sympathize with her because she has her whole life ahead of her and two young ones at that children.The I also experienced a zoom meeting on the internet last year as very special; To see and hear people who have the same ailments as me. It struck me at how cheerful everyone was.
Hopefully a cure will be found in the near future!
Yours faithfully,
Lia Krayenbosch Kellenbach
