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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.

Thinking in possibilities

By |25 maart, 2023|Categorieën: Stories and interviews|

When I was around 22, I went skiing for the first time. A holiday in the middle of nature and being active at the same time... I was immediately hooked! There were more years of skiing holidays that followed. Every year I took lessons and enjoyed skiing, and of course, après-skiing, because that's also part of it. When we had children, we decided not to go skiing temporarily because it would be difficult with small [...]

Heather’s story

By |29 december, 2022|Categorieën: Stories and interviews|

There was no such thing as diversity, equality, and inclusion in the 80s and 90s. Anyone with a disability or difference from the norms of society struggled hard. Unfortunately, some of us continue to struggle. Growing up in a small country town, access to neurological ophthalmologists wasn’t available. I was in elementary school when I was diagnosed with Autosomal Dominant Optic Atrophy (ADOA). My mom drove me to Salem, Oregon, [...]

Daniëlle talks about her passion for cooking and baking

By |11 september, 2022|Categorieën: News, Stories and interviews|

Daniëlle has ADOA. Although her vision is, to put it mildly, not optimal; cooking and baking are her passionate hobbies. Ever since I was a child, there has been one thing I have loved to do, and that is cook and bake. I am glad that at a young age, I was allowed to help my mother and grandmother in the kitchen with chores such as shelling the beans. In the meantime, cooking and baking [...]

Too visually impaired for a normal driving license, but still able to drive

By |5 september, 2022|Categorieën: News, Stories and interviews|

For people with a visual impairment, driving a car is not as straightforward as it is for most people. Being visually impaired does not always mean that obtaining a driving license is impossible, but people with visual impairments do need to be regularly examined. Rejected for the normal driver’s license? In the past, you would have been out of luck, but since 2009 there is a new regulation: driving with a bioptic telescope (BTS). Kirsten [...]

Contributing to the quality of life for people with visual impairments

By |5 september, 2022|Categorieën: News, Stories and interviews|

Interview with Ruth van Nispen. As of the 1st of June 2021, Ruth has been appointed professor of 'Visual Functioning & Health' at the Department of Ophthalmology of Amsterdam UMC. This new permanent academic position is associated with the Amsterdam Public Health research institute and the Free University of Amsterdam. The creation of this new position acknowledges the need for much needed attention on the impact that a visual impairment has on the overall health [...]

Realization – Saskia Veenstra 

By |1 maart, 2022|Categorieën: News, 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: News, 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, News, 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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