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!).

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!

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.

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!