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Realization – Saskia Veenstra 

2022-03-06T17:25:19+02:001 maart, 2022|

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 or felt different than others. For example, I stayed near to my friends, so I couldn’t lose them so quickly. Of course I missed some things in my life, but I just didn’t know any better.  In my adolescence things were the same. In that time I have always said that my disease did not make my life any worse.

But when I got children of my own I realized how poorly my vision was and how much things I actually missed. That realization was very painful and still is. There are so many little things I can not do or see because of my vision.

When I brought them them to preschool for the first time. All the other moms were looking through the window and said things about their children, while I couldn’t even see my child. And when I picked them up I could not see if they were happy or not. I also questioned if they could even see me, because I could not see them. That often went well, by the way. They also didn’t know better than that their mother is visually impaired.

When there was a Christmas performances from school I of course came but I often couldn’t even find them on stage. I couldn’t see if they liked it or not. I did often ask their father, but still it’s no fun not being able to see your own child when they perform.

Simple things like letting my children go play at a classmate’s house were already challenging. Especially if I didn’t know the address. Luckily my children helped me with reading the house numbers. If friends came to play at our house this was also a little bit stressfull. Because what if they just leave and I’ll have to search for them. Impossible!

Yes, I’m kind of glad they’re older now. The oldest two are adolescents and the youngest is starting to show signs of puberty as well. Sometimes they were a bit embarrassed for me. Happily, this went away quickly.

I don’t think it bothers my girls much that I am visually impaired. For myself I find it much more annoying and, as I wrote, also painful. But the main thing is that I always try to stay positive. I do as many things with my children as I can.

And now when they are a little bit older I can go shopping with them. They are no longer embarrassed by me. I can also have a good chat with them about my visual impairment. The oldest sometimes says: “It doesn’t bother me at all that you can’t see well. It is just the way it is. I’m used to it and I think it’s great how you do everything.” Well that’s nice to hear, isn’t it?

I am super proud of my girls! We are having a good time together. I don’t need to see their faces to know how they are doing. I do not have to hear them either. I feel immediately upon entering that they are cheerful or not. And I think many blind or visually impaired mothers recognize this. Never doubt your feelings. They are always right. And whether you’re blind or partially sighted or fully sighted, you are a good mother. Especially when you want to be one!

Going to school with some extra guidance – Henk Benjamins

2022-03-06T18:04:16+02:001 maart, 2022|

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 impaired? Will my little daughter be able to participate in gymnastics?

These are questions that I get asked regularly in my daily work. My name is Henk Benjamins, ambulatory educational supervisor with Visio Education in Haren.

Visio Education is part of Royal Visio, a national institution that deals with Research, Rehabilitation, Education and Living for the benefit of people – young and old – with visual impairment.

When a child with a visual impairment attends regular school, a lot of school things go just as they always do. Some things, however, go differently. This can raise questions with teachers and parents, but also for the child or adolescent or among fellow pupils. At Visio, we have specialized teachers – called itinerant educational assistants – of whom I am one, who can answer these questions and who support a visually impaired pupil in all school matters that are a little different. Together with my colleagues, I support not only the student but also the teachers and tutors at school. We do this in all forms of education and from preschool to student. For children and young people with a visual disability it is also nice to go to school or follow an education in their own environment. Because of the itinerant educational guidance this has been possible for many years and with success!

The goal of itineranty educational support is to enable a child or young person with a visual disability to participate in regular (or special) education as good as possible. The paediatrician, together with the pupil, the teachers and often also in consultation with the parents, looks at what is needed to make this possible. This could involve special aids, such as a laptop with magnification software or adapted teaching materials on A3, digital or in Braille, but also, for example, better lighting during schoolwork or extra time for a test or exam. Giving advice and teaching skills is customized, aimed at the specific situation and needs of the student or pupil. For example, a child or young person who is partially sighted as a result of, for example, Autosomal dominant optic atrophy (ADOA) requires different adjustments than a child with another visual disorder. On top of that, each child is also unique with their own personal characteristics and abilities.

“I like to talk to my itinerant educational assistant about school and how best to approach something. For example, drawing with a thick pen is more convenient than with a pencil. And I have now exchanged my school books for digital books on a laptop. I also like that he explains to the teachers what condition I have and how they can best deal with it. Through simple tips like writing larger on the board or by sharing the image of the IWB with me and extra time during a test, the lessons are a lot less tiring for me”.

The itinerant educational guidance is not only aimed at good education, but also at the formation of the child or young person into a person who later, despite his or her disability, can participate fully in our society. In this process, the stimulation of self-direction of the child or young person is an important aspect. Furthermore, the educational supervisor thinks about the future possibilities of the student and informs the school and parents about the legal and financial regulations.

In secondary education, guidance takes on a different form than in primary education, and similarly in vocational training and higher education. Guidance is directed towards what is needed in the educational situation, working towards the young person being able to find his or her way independently with the right skills and necessary aids. The educational educator gradually takes on a more coaching role. Of course the responsibility for the education of the pupil or student lies and remains with the school concerned.

For questions that fall outside the expertise of the itineran educational assistant, he or she will refer teachers and parents to other support services within Visio. Examples include relevant activities and training, ophthalmological examinations, ICT training, automobility solutions (getting your driver’s license) by Visio Revalidatie & Advies. In short, the itineran educational assistant is the contact person for everything that is involved in the visual disability of the pupil or student at school.

General information about Visio can be found on their website: Royal Visio
For information or registration, please contact our Client Services Office: 088 585 85 85

My view of the world – René van Gerwen

2021-10-03T15:49:00+02:003 oktober, 2021|

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” so far, not even in the family, as far as is known. I experience my life as normal and privileged because of all the opportunities I have been given to make something beautiful out of it.

Since I have contact with fellow-sufferers, I have noticed that not everyone has the same view on what a normal life is. This gave me food for thought and a reason to tell something about my life in 500 words. With this, I hope I can encourage and inspire others in a similar position.

I was taught from an early age to act ”normally”, not to see myself or behave as an exception or as being limited. That’s how my parents brought me up. My father had a similar visual impairment, had a great business career and never set himself up as ‘limited’ either. With this strategy in mind, I studied mechanical engineering in Delft and then worked for various companies, including TNO and Unilever. At Unilever, I spent 16 years travelling all over the world to design the technical installations at factories, supervise construction, solve problems and train employees. The limitations I encountered during all that travel and work were always solvable. Over 5 years ago, I got fed up with this beautiful rollercoaster job and resigned to start my own one-man engineering company, which has been running like clockwork ever since.

Looking back on my life so far, I am happy with my strategy, because it has helped me to get a lot out of my life and has given me a pleasant sense of autonomy. But that this does not always happen automatically became clear when I applied for my first permanent job, with an engineering degree in my pocket. The medical examiner (it was obligatory in those days): ‘But sir, what are you doing here with me? If a typist stands in front of me with one hand, I don’t approve of him either, do I? Here is a leaflet with the application procedure for incapacity for work and benefits. Good luck.” After a formal objection procedure, I was temporarily approved for one year; then it turned to: ”You have shown that you function well and there are no problems; why should I, as an examiner, start making problems?”

With these and other experiences, I can advise fellow sufferers to stand up for themselves, to make good use of all the help and support available, but also to stay in control and to remain critical of patronising and pampering. And also: follow your dreams and ambitions; much more is possible than you initially think. If you want to know more or want to discuss something with me, you can contact me via one of the boardmembers of the Cure ADOA Foundation.

‘Amount of research gives hope for treatment’

2021-10-03T15:32:28+02:003 oktober, 2021|

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 about it about four years ago. His vision deteriorated within a short time from 80 to about 50 percent. Through the diagnosis of ADOA in his son, Ralph found out that he himself is a carrier. My father, now deceased, also had very poor eyesight, so there is a good chance that he also had ADOA.

What was it like to receive this diagnosis for your son and how do you deal with it as a parent?
Of course it was a big shock for me and my wife. You mainly don’t know what the future holds for him. A lot of pennies dropped after the diagnosis. Once, for example, we were in an ice cream shop where it was very busy. When we asked my son to look for the flavour of ice cream he wanted while we waited, it turned out he couldn’t read the signs. My wife is mainly concerned with what he needs now. At school, he gets extra time for tests and he can do them on his laptop. I have mainly been busy with what is going on in terms of research into ADOA, or in other words, what we can expect in the future.’

Ralph’s other children have been tested and do not have ADOA. We’re glad we know that now, but in hindsight we may have tested them a bit too soon. Bartimeus advised us to do so and we didn’t really think about the possible consequences. When the clinical geneticist gave us the results, we realised that we might as well have waited until the children could decide for themselves whether they wanted to be tested.

Ralph is involved with the Cure ADOA Foundation. He looks for ongoing research and tries to gather as much information as possible.

How did you get involved in the foundation and what is your motivation for this work?
It started with the Facebook group, where I read an article about Stokes’ research. I wrote to them and shared my results with the board. I came into contact with Hedy from the board and she had a large document with all kinds of research. I started to dig into it. I made a lot of phone calls, sent e-mails and asked questions. I made the first contacts with research organisations and tried to separate the wheat from the chaff. Do we have to delve into something or is it still too vague? By the way, I often do this together with some other board members of the foundation.

Ralph is hopeful when it comes to research. Compared to 5 years ago there is a lot of research in the field of ADOA, Glaucoma and Leber. There is a lot going on. There are two or three commercial companies seriously working on developing a medicine for ADOA. I maintain close contacts with them. The researchers outline a time path of 5-10 years for a treatment to keep sight stable. For ADOA+ it is unfortunately more difficult. Most researchers do not yet dare say much about it. Other processes in the body also play a role. Work is also being done on gene therapy. That timeframe is more likely to be 10 years and it is also expected that there will be a limited improvement in vision. Positive therefore!

The story of Elina

2021-10-03T14:29:31+02:0013 maart, 2021|

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. He sent me to an ophthalmologist in the hospital who referred me to the UMC in Utrecht. This all left a deep impression. What a lot of tests! Later it appeared that my optic nerve was small, but they said ‘this will grow back’. At that time I saw about 80%, but glasses did not help. I had to wear a cap in the classroom and then I would have less problems.

Years later
The years that followed I denied that I really had something wrong with my eyes until 3 years ago. Meanwhile, I was 18 years old and I met my boyfriend. Together we had a lot of fun, went to amusement parks, watched movies and went out for dinner a lot. My boyfriend and his mother noticed that I was making a lot of effort to, for example reading the subtitles at movies and when walking between small things. This was followed by a hard struggle with myself: I saw 80%, 20% less than them, well that was just the way it was. But my friend and my mother-in-law told me to have it checked again, maybe it had diminished. Together with them I went to the eye doctor in the village. He could not measure anything wrong, my eyes were fine, but still I saw badly. He did not understand this and sent me to the ophthalmologist in the hospital. I first thought, not again, I do not want this! And yes, again some tests. Yet he did not trust it, so I was sent to Bartiméus in 2019. I got several tests and there was the ‘redeeming’ answer: I have ADOA. And what did I think? I was shocked and didn’t understand anything anymore. I got a lot of explanations and we did not understand why the UMC had treated me like that. But that was the past!

The Future
Now I could finally look ahead. Although I often find that difficult. I often think: “If I start a training course now in what I like, will I be able to do this work in two years or will my eyes have deteriorated again by then? I received and am receiving guidance in this. They have been to my home to give explanations to those who are close to me and who can guide me well. They have made sure that I can do my work well by adjusting my workplace slightly. My computer has also been adjusted with the colors and I learned to be more handy with it, which benefits me a lot. Recently I started wearing filter glasses with a light transmission of 11%, which helps to reduce the many headaches and fatigue due to the light and efforts during my day. I can’t accept it very well yet, I can see about 35% now. What if I didn’t have this, then life would be a lot simpler. Despite that there are also a lot of nice things and I can more easily indicate what is going on or if I need help: ‘I just don’t see it!’

I’m grateful for my boyfriend and mother-in-law, who, just like my father, help me enormously through this sometimes difficult struggle by, for example, reading letters that are in too small print, holding my hand in the dark so I don’t have to concentrate too much or just listening when I’m having a hard time and experience too many struggles. But most of all accept me as I am and help me as much as possible!

Lia tells her story

2021-03-14T17:03:06+02:0013 maart, 2021|

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 would slowly go blind.

He immediately added: “Well, see you in six months” and led me to the exit. Bewildered by this unexpected announcement, I then stood outside again. I had had no opportunity to ask questions and tried to forget about it, but still often had to think about this remark, which was puzzling to me. After six months, of course, I was back again.

The ophthalmologist then said that this condition occurred in several of my relatives and also in my mother. He wanted to do a PhD on it, but since my mother was not in the mood for all kinds of examinations (she was about 83 at the time and demented) this was not possible.

A few years later we moved to Hoofddorp where I got an ophthalmologist who immediately mentioned the name of my condition and said 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 wanted to participate in a color test. Of course I wanted to and so I learned that I had arranged the colors incorrectly exactly according to the book. According to this introverted doctor, who was very exited and was almost cheering for joy, this proved that I was color blind and had (A)DOA. He also told me that the Normans had brought this condition to the Netherlands long ago and that most of the Dutch patients live in Katwijk. I still knew little about it and so did the eye doctor, as it turned out later. When I got an iPad and could look up what (A)DOA does to your optic nerves, I understood a little more.

Years later I looked again and saw that there was also a DOA+. When I read about that, everything fell into place. I suddenly understood why I had fallen over so much, why my hearing had also deteriorated, why I often choked and why I had trouble pronouncing difficult words in the evening, and also had neuropathy in my feet, legs and hands. And then I suddenly remembered that my mother, who died 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 frightening. I could see me in 10 years sitting in a chair: Blind, deaf, no longer able to talk, eat, move, etc. Not a nice prospect! After a few gloomy days, I spoke sternly to myself and resolved to live in the “now”. Nobody knows what the future will bring, including me. Maybe it will all turn out better than expected.

The ophthalmologist of the color test has now retired. The years before that I always informed him about the facts that I found out on the Internet. He was always very interested in this. I was also examined for half a day at the AMC in Amsterdam. These examinations also showed that I most probably have (A)DOA.

The last few years I felt the need to meet fellow sufferers more and more. I was told that I had to go on Facebook. I never wanted that, but then I did it anyway. The next day I had about 200 friend requests from people I did not know at all. I was shocked and got off quickly.

A while later I suddenly got the idea to call the Oogvereniging, a Dutch patient association for eye diseasses. They gave me the phone number of the secretary of the ADOA patient group: Cure ADOA Foundation. I called immediately and got Gabriëlle on the phone, who told me that she also has Adoa+ and that few people have this plus. I was so happy to have finally found a fellow sufferer and then someone who also has a plus! At the same time I sympathize with her because she still has a whole life ahead of her and also has two young children.The zoom-meeting on the internet last year was also a very special experience for me; seeing and hearing people who have the same condition as I have. It struck me how cheerful everyone was.

Hopefully a cure will be found in the near future!

With kind regards,

Lia Krayenbosch – Kellenbach

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