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Stories and interviews2021-03-14T17:22:21+02:00

On this page you can read stories of and interviews with fellow sufferers. Unfortunately we are not able to translate it to all the other languages and we only offer this in English. If you want to return to another language you can click on the flags in the top menu.

Realization – Saskia Veenstra 

By |1 maart, 2022|Categorieën: Stories and interviews|

As a child I never felt different from other children. My mother was visually impaired, and around the age of six it became known that I was also visually impaired. In my younger years I went to special education for blind and visually impaired children. After school I played with the neighborhood children, like every normal child. I guess I had already taught myself tricks, so that I actually did not suffer from my disability [...]

Going to school with some extra guidance – Henk Benjamins

By |1 maart, 2022|Categorieën: Stories and interviews|

Note: this article is about guidance in the Netherlands. Do you know agencies in your own country that provide similar care? Please let us know by emailing us at kim@adoa.eu and we will add it to this article! What does my student see and what doesn't he? Are there any adjustments needed in the classroom? Won't my classmates think my aids are weird? Won't my son be bullied more quickly because he is visually [...]

My view of the world – René van Gerwen

By |3 oktober, 2021|Categorieën: News, Stories and interviews|

3 July 2021, René van Gerwen As a small child, I probably had 30-40 % vision; it is probably because my file disappeared thanks to arguments between eye doctors. Now, at 64, I can see 5-10 %; the deterioration is slow but steady. I have ''normal'' glasses. -4/-5 glasses. Within my family (incl. nieces/cousins, through father's/grandmother's line), the OPA1 gene defect has been diagnosed in at least 5 relatives. I have no ''plus symptoms'' [...]

‘Amount of research gives hope for treatment’

By |3 oktober, 2021|Categorieën: News, Stories and interviews|

Ralph is 48 years old and lives in Utrecht. He has three children, one of whom has already left home. Ralph works at Schiphol Airport as an air traffic controller and in his spare time he likes to sport and do DIY projects. He is only an ADOA carrier and experiences no symptoms himself. Our board member Maud interviewed him. What is your link with ADOA? My youngest son has ADOA, we found out [...]

The story of Elina

By |13 maart, 2021|Categorieën: Geschichten und Interviews, Stories and interviews|

When I was in 7th grade I noticed that my eyesight was worse than that of all my classmates, I could not read the IWB and was bothered by the bright light of the fluorescent lamps. I asked the teachers if the screen could be a bit bigger, but apparently I was a big poser, because they didn't believe me. Finally, together with my father, I went to the eye doctor in the village. [...]

Lia tells her story

By |13 maart, 2021|Categorieën: Geschichten und Interviews, Stories and interviews|

Dear fellow sufferers, In the piece that follows, I share my experiences with Adoa+. When I was about 45 years old (1989), I went to the ophthalmologist in Amstelveen for the semi-annual check-up. At the end of the consultation, he asked if I had any questions and I said that my vision was poor even with my glasses on (I am nearsighted). He immediately replied that my optic nerves were dying and that I [...]

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