ADOA is a rare eye disease and not every ophthalmologist is familiar with this disease. As a result, the diagnosis can take a very long time in many cases. It took Jan van der Zon eight years (!) before he knew the diagnosis. He has written down this entire process and wants to share it with you. This story clearly shows why it is so important to raise awareness for ADOA.About eight years ago I went to the optician to have computer glasses fitted. The optician could not get a good measurement for me and the advice was to visit the ophthalmologist. I then made an appointment at Zonnestraal, where several ophthalmologists work.
Again and again
A visual field examination was done there. The ophthalmologist said that the examination did not have the results they expected. The proposal was to repeat the survey the following week. The second time the test came out the same again. The ophthalmologist wasn't sure yet and suggested repeating it again. I had my reservations about this and the ophthalmologist was not really clear to me. The third test also produced the same result. The ophthalmologist told me that I would receive an emergency referral to the neurologist. On the paper he gave me to give to the secretary, I read in large letters: suspected pituitary tumor. As you might imagine, I was scared to death. “A tumor in my head?!”
Pituitary tumor
Within a week I was seeing the neurologist. He asked a few questions and immediately made an appointment for an MRI scan. Two days later I lay there, for the first time in my life, in such a large tunnel. As long as 45 minutes! There I lay, fearing what was to come. “What's wrong with me?” A week later I got the results. There is nothing wrong with my brain. How happy I was! Then I had to go back to the ophthalmologist for further examination.
Other ophthalmologist
Back at the ophthalmologist I was told that there must be something going on in my head and that it was not my eyes. I was fed up and went to my doctor to tell my story. My GP referred me to another ophthalmologist in Harderwijk. They would be experts here. I left in good spirits. The visual field examination was also done here, but the ophthalmologist in Harderwijk was less concerned about the result. An ultrasound of my eye was immediately done. This showed calcium on my optic nerve, which could possibly be the cause of my reduced vision in the distance. This gave me a feeling of peace, because finally something had been found. From then on I went for annual check-ups. After the second year she suggested cataract surgery because she also saw some cataracts on one of my eyes. The cataract surgery didn't mean much, but unfortunately it didn't help. The next visit, the ophthalmologist decided to refer me to a colleague in Nijmegen, because my vision was still poor and I sometimes simply did not see the balls coming while playing tennis.
Reference number…
A few months later I had an appointment in Nijmegen. The examinations took a long time and one examination after another took place (color vision, blood tests, DNA tests). A few months later I got the results. It was clearly explained to me that I have a hereditary disease that I may have inherited from one of my parents and that my daughter and possibly my grandchildren could also have it. She wrote down the diagnosis DOA (the same as ADOA) on paper. I was given an explanation that the disease can remain stable, but that could not be said with certainty. I received some advice not to drink too much alcohol and possibly to take some extra vitamin B12. All this was transferred to the ophthalmologist in Harderwijk so that the check-up can be continued there.
Eight years later I finally knew what was wrong with me...
Would you like to respond to this story? Then you can always email Jan van der Zon at j.vanderzon@chello.nl
