Charity dinner

2023-01-17T20:29:18+02:0017 januari, 2023|

A charity dinner was held in Rotterdam on Monday 16 January 2023. This annual event, organised by the Medical Faculty Association of Rotterdam (MFVR), raised money for our foundation this year. After they approached us for this in December, we were immediately very excited and, above all, surprised. The MFVR board had seen the documentary and therefore chose our foundation.

On the evening itself, Kim Warink (board member) and René de Coo (medical advisor) were present and briefly addressed the large group of medical students. Before this evening, students could buy lottery tickets and on the evening itself, a wide variety of prizes were auctioned off.

The final proceeds were €2671.59

The first ADOA-plus meeting

2022-12-29T13:47:32+02:0029 december, 2022|

After four years since the foundation’s inception, the time had come: the first ADOA-plus day. This meeting was fully funded by the institutional subsidy we received. The meeting took place at Hotel van der Valk Breukelen. This was easy to reach by public transport.

Eight fellow patients’ sufferers and their loved ones came from all over the country. We were allowed to use a beautiful meeting room, microphone, flap chart, notebooks and pens. We were also allowed unlimited coffee, tea and sweets and had lunch in the hall. We would like to use this opportunity to thank Hotel van der Valk Breukelen once again for their hospitality. We will be organising more gatherings here in the future.

We started the day with coffee and tea and, as we are used to at other gatherings, we almost forgot the time to start already, because everyone immediately got to talking to each other. There were some familiar faces, but also some new ones.

After everyone had been provided with drinks, we started the day with a short introduction round. The morning part consisted of an explanation of ADOA PLUS by Cansu de Muijnck. Hereby we would like to thank her again for her contribution to this morning! After that, Gabriëlle, secretary of our foundation, introduced the foundation and how far we are with our four goals: Raising money, creating awareness, close contact with doctors and researchers and the fellow patients’ contact. Afterwards, fellow patients were able to ask questions.

Over lunch we got to know each other a little better. The afternoon part consisted of sharing experiences. We did this in small groups. Each group was given several questions for when one couldn’t remember what to talk about. This was not even necessary, as it was very relaxed, and conversations soon felt fluent.

The day flew by. As far as we are concerned, it was a great day and we are already looking forward to the next gathering.

Several compliments from fellow patients:

  • The day was enjoyable, informative, and accessible
  • This was a very special day: So nice to see ADOA plus patients together
  • It was nice to meet people experiencing the same thing.
  • It felt very trusting, like we are family. 
  • It was nice that the microphone was passed around all the time, so everyone could hear it well.

Movie premiere

2022-12-29T11:18:50+02:0019 oktober, 2022|

September 28, it was finally here. The long-awaited documentary ‘WAZIG – Leven met ADOA’  (Life with ADOA) finally appeared online. The documentary was produced by Nina Warink and performed by Laurens Smit.

The documentary is about ADOA and the plus variant. Family members, as well as other people with ADOA are interviewed by Nina. Through images of daily activities, it is made clear what impact ADOA can have on daily life. Two doctors explain ADOA, and Nina herself experiences what it is like to be visually impaired. Currently, the documentary has already been viewed more than 160,000 times and the reactions below the documentary are very positive!

On the evening itself, Nina organised a premiere for invited guests, including the participants of the documentary and the board of the Cure ADOA Foundation. The MuZIEum was also present with special glasses to let people experience what it is like to be visually impaired. The premiere took place in the Ketelhuis (Cattlehouse) and was a great success!

Nina Warink & Laurens Smit
Nina Warink geeft een speech
Hulphond Cato
MuZIEum lopen met een speciale bril

A wonderful amount of funds raised!

Besides the board being invited to the documentary, we were also presented with a cheque from Nina. Through her online clothing sales, Nina raised a whopping €7354 for the Cure ADOA Foundation! All funds will be used for research! Added to this are €665 in donations via Tikkie (Dutch payment system using iDeal) and the ‘Donate’ section of the website. After this day, we are confident that because of this documentary and the donations that are now coming in, we will raise the €100,000 needed for research at Stanford University this year!

Het bestuur met de overhandigde cheque

Also, all participants and other attendees with ADOA and their loved ones received a special ADOA pin that Nina had made specifically for our foundation.

Photographs Olivia Witmond ©

Daniëlle talks about her passion for cooking and baking

2022-09-11T11:44:26+02:0011 september, 2022|

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 have become a hobby that has got a bit out of hand and with which I also partly earn my living with as a foodie on social media. I find baking in particular very relaxing to do and in the end, it almost always results in something delicious!

While standing in the kitchen, I enjoy the smells that are produced.

My eyesight (16%) does not hinder me in the things I make or want to make. I love to try new things. Sometimes it takes a bit more time, but I don’t mind. I take my time! As long as I don’t have to take part in a tv programme with time constraints, I’ll manage!

I don’t have any other adjustments for when I’m cooking. In terms of timers, I do use the smart speakers in the house, they are fantastic!

I also do a lot by feeling, I use my sense of smell and I particularly enjoy being in the kitchen.

Would you like to follow Daniëlle? You can do so via Instagram (over 11,000 followers!) or via Facebook (over 1500 followers!).

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

2022-09-12T09:07:04+02:005 september, 2022|

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 Smit (21) is happy to tell us about her experience with the BTS.

Hello! I am Kirsten Smit. I am 21 years old, and I study Fine Arts and Design in Education in Groningen. I also have ADOA and currently only have 30% vision.

When I was little, it already became clear that driving a car was not for me. The limit for driving is 50% vision, which I had already passed at that point. I have always found this a bit unfortunate, but there were no exceptions or regulations to assist visually impaired people at that time. When I turned 16, I got my scooter license, because there are no medical requirements or examinations for that. I was very happy with it. I always enjoyed riding my scooter and jokingly said I would later pick a very handsome car driver who could drive me around, since I was not allowed to do so. But when I turned 17, it was suddenly possible for me to drive a car while using a device called a BTS. A BTS is a kind of spectacle with a telescope in it that allows you, for example, to see the road signs or exceptional situations on the road. It took some getting used to, but after a lot of special lessons at VISIO in Haren and driving lessons with Rosita, I learned to drive using this brand-new device. It was like a whole new world opened for me, even though there were exceptions and limits attached to my license. For example, I was only allowed to drive one hour after sunrise to one hour before sunset. During the summer, this is fine; however, during winter this can be come increasingly difficult. The sun already goes down around five o’ clock.

Even this changed a year ago. All people using a BTS to drive were allowed to take the driving test again, individually, but this time for driving in the dark. I attended the exam together with my mum and passed it! Now I can drive with the BTS whenever I like.

I live in Groningen, so I often drive home to Drenthe over the weekends. It’s nice that it can be done this way today and that I now can be my own handsome driver 🙂

Kirsten has emailed the created of the BTS with some questions. WE hope to get an answer soon, so we can share some more information with you!

Contributing to the quality of life for people with visual impairments

2022-09-05T12:01:53+02:005 september, 2022|

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 and functioning in daily life and society. For over 15 years, Ruth has been contributing to improving the quality of life, mental well-being, and participation of this target group. You can find more information about the research and treatments here: https://lowvisionresearchamsterdam.com

Could you introduce yourself to us?

I am 49 years old and grew in in Vlissingen, Zeeland. Thirty years ago, I moved to Amsterdam to study psychology. There were very few jobs in social work, but an internship at the Antonie van Leeuwenhoek hospital got me hooked on doing scientific research. You may be more at a distance and not directly helping people in t

he field, but you may be able to discover things on a larger scale which indirectly helps a larger group of people. That’s what the true appeal of doing research was for me.

What did you do after your studies?

After my studies, I worked at Nivel for a few years. It is a research institute in Utrecht that conducts research into general healthcare. One of the things I did research on were people with rare diseases. It included research into the quality of life of this focus group in comparison to people with more common diseases. If you are doing research and you want to make progress, at some point it is a good idea to study for a PhD. In 2005 I found a PhD position at the VU Medical Centre in Amsterdam. I ended up in the ophthalmology department with ophthalmologist Ger van Rens, professor of visual rehabilitation.

There I spent four years doing research on the effects of rehabilitation of people with visual impairments. I also did a lot of work on questionnaire development to be able to reliably find out what is going on with people.

At the time I also found out that depressive symptoms occur in about one in three people who are partially sighted. This was also mentioned in the literature, but I saw it confirmed in my own research.

I then devised a study to see how these depressive symptoms could be prevented from developing into a real clinical depression. After all, mild complaints increase the risk of developing a depressive disorder. One of the first follow-up studies that I did with my PhD student Hilde van der Aa was into the cost-effectiveness of a treatment that prevents people from developing a disorder. The treatment turned out to be highly effective in reducing complaints and preventing disorders.

What other subjects are you researching?

In the meantime, all kinds of other questions came in from various groups of visually impaired people; especially through Royal Visio and Bartiméus. I have addressed these research questions as much as possible, applied for grants, and now I have quite a large group of people conducting research on various topics relating to visual impairment. For example, we are conducting research into fatigue, another common problem.

I also do research that is more in the direction of clinical research. For instance, I am currently conducting a major study on the effects of corneal transplants. In particular, the effect of the disease and surgery on the quality of life and participation of patients. In other words, can you continue to work, take part in society, and what about your mental health? After a cornea transplant, patients can continue to suffer from pain, dry eyes, and discomfort from light, this can make it physically difficult to continue to do certain things.

Can you tell us something about your professorship?

Presently, I have made a career in my department and have become a professor. As a professor, Ger van Rens held a special position for 20 years on behalf of the General Society for the Prevention of Blindness and then on behalf of Royal Visio. The Robert Coppes Foundation was interested in linking our department and me through a special professorship. They wanted more attention for research into people who, in addition to a visual disability, also have other disabilities, such as psychiatric problems.

The Vrije Universiteit (Free University) in Amsterdam thought that, after having had a special position for 20 years, it was time for a permanent position. That is fantastic, because it is an enormous recognition for the target group of people with visual impairments. The VU considers this topic to be so important, both scientifically and socially, that they want it to be given permanent attention, so to speak. We have had a close collaboration with the Robert Coppes Foundation for a long time, so the research for their specific target group has become an important part of my line of research.

What is your drive, what makes your job fun?

Helping people. Ultimately, with this research I want to achieve that people experience less misery from the limitations they have, and so truly improve their quality of life.

What makes me happy is that we have developed a treatment for depressive symptoms. We have been able to calculate how many people have genuinely improved compared to people who did not receive the treatment. We are now doing the same with the treatment for fatigue related complaints.

We devise such a treatment together with other scientists and have adapted it for people with visual impairments. Experts by experience, i.e., people with a visual impairment, also are part of our design team. We are now testing this treatment in a large study to see if people really benefit from it. I think it is very cool to be able to test your research and see that people are experiencing direct results. For some, this means that they can pick up their hobbies again and for others that they can go back to work. And that they can take part in society again and that you don’t have to sit in a corner because your vision is impaired.

How can we access the treatment for sombreness and depression?

The stepped care treatment for the elderly (50+) with somberness or depression can be taken via the Robert Coppes Foundation, but also Royal Visio and Bartiméus have this and other treatments. 

More information: https://www.visio.org/nl-nl/home/actueel/nieuws/2021/januari-2021/behandeling-somberheid-ouderen-visueel or https://www.bartimeus.nl/specialistische-kennis/verlies-van-zicht-een-levend-verlies.

What are you currently working on?

Many different projects. We are still developing Patient Reported Outcome Measures (PROMs). For example, one project is aimed at people with macular degeneration, in which one can get haemorrhages in the retina, which can nowadays be treated with injections that reduce the haemorrhages. The questionnaire for these patients is about quality of life, but also about how you deal with it in daily life. So how do you cope with reading, driving a car, shopping independently. That sort of thing.

The idea is that the PROM reflects the patient’s perspective as well as the ophthalmologist’s perspective, which is about treatment. The ophthalmologist knows how things are going clinically, because each time the vision is measured, but the ophthalmologist does not know how things are going practically at home.

Through the PROM questionnaires, the ophthalmologist can get a better idea of this and, if necessary, call in extra help. This improves the care a little.

Other projects deal with depression and anxiety because they are and will continue to be important themes. For instance, there is fear of going out on the street or fear of going blind, so we are researching the psychosocial aspect of a visual impairment.

In the field of public health, we have a large study on eye screening in home care. This is mainly about the elderly because severe visual impairment is most common in the elderly. It is often age-related eye diseases that cause permanent visual impairment, such as macular degeneration, glaucoma and diabetic retinopathy.

It is known that many people in nursing homes are severely visually impaired, but this is much less well known among the elderly who still live at home with home care. Since people are living at home for longer periods of time, we thought of working with nurses to see how the eyes of these elderly people are doing. There is not much attention for this yet, while many health problems arise from this. Depressive symptoms, and an increased risk of falls and bone fractures, such as hip fractures, are a few examples of this.

A vastly different research project that I have become involved in, are some studies on biomarkers in the eye related to Alzheimer’s disease. We are investigating whether we can detect Alzheimer’s at an early stage by conducting different types of scans of the retina at the back of the eye.

What other types of research is conducted at the ophthalmology department of Amsterdam UMC?

In my line of research, I am mainly concerned with the impact of visual impairment on daily life and quality of life. But we also have research going on in the field of macular degeneration (Prof. Schlingemann), the heredity of eye disorders (Prof. Camiel Boon and Prof. Arthur Bergen), retinoblastoma, a rare eye cancer in small children (Prof. Annette Moll) and in the field of orbital surgery (Prof. Saeed), which involves the eye socket and problems caused by Graves’ disease, for example.

The merger of the AMC and VUmc sites into Amsterdam UMC has enabled us to bring together some exceptionally good areas of research. We do a lot of fundamental work from the laboratory, clinical research (into the effectiveness of medication and gene therapy) and I mainly do applied research (practice-oriented and focused on the impact on people’s lives).

Apart from my own research, one of my tasks as a professor is to publicise the fact that our Amsterdam Eye Centre conducts high-quality scientific research from the laboratory bench to the kitchen table.

Were you familiar with ADOA and ADOA plus?

No, I did not know it. I have seen a lot of rare diseases in recent years, but not this particular one. Of course, I am familiar with the phenomenon of opticus atrophy, but I did not know that it had a specific dominant inheritance.

Do you have any tips for people with ADOA or ADOA plus?

Although it is not a tip, we have a large study underway together with Visio Het Loo Erf that also deals with people who have both a visual and a hearing problem. A well-known example is Usher’s disease. We want to look at how these two senses work together and compensate each other when one or both becomes impaired. We look at the tipping points, when does the degree of vision loss and/or hearing loss affect mobility, information processing, communication and energy balance. People don’t seem to notice this compensation mechanism themselves. We discovered this by asking people who have this joint impairment. It turns out that people find it exceedingly difficult to describe how compensation works. Hopefully, we will soon be able to measure this and find leads as to how we can advise people specifically with aids or training. This research is perhaps relevant to your target group given the hearing impairment that can also occur with ADOA.

Cure ADOA Foundation App

2022-08-22T19:47:07+02:002 augustus, 2022|

The Cure ADOA Foundation, in collaboration with Bundeling, is creating an app for the ADOA community. The app is available for fellow sufferers and their loved ones, but also for staff, volunteers, doctors and researchers. So basically for everyone who has a connection with ADOA or ADOA plus.

Through our own app it is possible to have group chats with each other, but also to have one-on-one chats with each other, also news items and activities are shared here. With this app you stay up-to-date with all the latest news. Because members are divided into certain groups, only information that is of interest to you is shared. The app also contains an automatic translation function so it is available in English, German and French. In this way we also provide more connection with foreign countries!

The app will launch on August 10 at 12 o’clock in the afternoon and will then be available for free download in the Apple Appstore and Google Playstore. In addition, the platform can also be viewed via the web browser.

So everyone is welcome and we look forward to your registrations!

Would you like to become a member of our ADOA community? Then sign up by emailing your full name and email address to kim@adoa.eu. If you are a doctor or researcher please let us know in your application

Also any questions about for example privacy etc. can be sent to this email address!

Realization – Saskia Veenstra 

2022-08-02T19:32:21+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

2022-08-02T19:32:38+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.

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