Interview
Marianne

SensUs 2020 challenges Teams to develop biosensors for the detection of valproate, an important drug in the treatment of patients with epilepsy. We spoke with Marianne about her experiences with epilepsy.

When I was a child, I had a dizzy feeling in my head and it was very hard for me to concentrate. My mother, who also had epilepsy, decided to take me to a neurologist. The neurologist said that after 5 minutes of talking to me, she saw 20 absences, which resulted in a fast diagnosis: Epilepsy. Back in the days, there was very little knowledge about the disease. It was quite a taboo in society and people would think that you are stupid. Over the years, the knowledge of epilepsy has grown and I got two medicines. During my pregnancy and a year after, I did not have any attacks. However, it came back more intense. I started to get clonic attacks. When this happens, I am conscious but all my muscles contract at once. I call it ‘the ‘hell on earth’. 

As an epileptic patient, I cannot drive, go on high hikes, or go to a country where I do not speak the language. However, I try to live a normal life. For an epileptic patient, my hobbies and work are quite unusual: I am a swimming teacher for children who already have their first swimming diploma. It is important that the children already know the basics of swimming because when I have an epileptic attack, the children need to be able to swim on their own. Even though I enjoy doing my work, it comes with its own terms and conditions. For example, I need to be able to cancel a class at any time when I am not feeling well, I have to wear special swimming glasses so that I do not see light reflections from the water. I also like to swim indoors and outdoors but with a restriction. I will not go swimming in a river or a sea since this is too dangerous for me. Swimming is my passion and I do not want to give it up; it is not in my nature to sit around and do nothing all day.

Living with epilepsy brings many restrictions. For example, when there is a large change in air pressure, I will notice this. When it is going to storm, it is also going to storm in my head. As a result, I will get a lot of absences. For me, absences mean that I miss parts of sentences. You can see this as trying to read a newspaper but in every sentence, a few words are missing. When this happens, it is very difficult to understand the text when you are reading something. I always try to find out where I got lost. This is quite demanding and it can be exhausting. For me, it differs how often I have these absences and how long they last. It can differ from 10 times to 100 times a day. Little absences happen very often, that nowadays it is normal for me. 

Over the years, I have had a lot of different medications. I have tried around 60% of all the antiepileptics that are currently available on the market. Most of them have side effects that influence your mood; you can become depressed. In the past, I have also used valproate, which worked but also caused many side effects for me. I got stomach problems for which I needed to take antacids and I needed a special diet. I eventually stopped with valproate due to these side effects. Another big side effect was the greater need for food, which eventually affects your self-image. 

For the future, I hope that the next generation of medicines will have fewer side effects and that the impact of switching between medication has less impact on your body. In addition, the availability of anti-epileptic medication in the Netherlands is unstable. Every three months it is unsure whether you will receive your medication. 

Neurologists talk about new treatments and a change from chemical treatment to deep brain stimulation. An example is a kind of shock therapy, where they put something in your brain that is going to deliver pulses. This is something that really scares me because I already have a lot of brain damage, so this does not seem appealing to me.

I think that SensUs is an amazing initiative. SensUs informs a broad audience about the disease, which I find very important. Unfortunately, epilepsy cannot be cured, but I hope that new ways will be found to improve the lives of patients with epilepsy!