SensUs interview: Erwin
Can you tell something about yourself and about your daily activities?
My name is Erwin Lont and I’m 25 years old. Currently, I am working in green landscaping. Furthermore, I really enjoy sports and hanging out with friends. In my youth, I experienced a substantial amount of epileptic seizures. Because of the high number, I sometimes did not notice them anymore. One time I got a seizure while I was driving; luckily someone was sitting next to me and was able to help me out. Now, I take medicine and have a more regular sleeping pattern, which helps to suppress epileptic seizures.
How did you find out that you had epilepsy?
In the year 2009, I got a brain infection that put me in a coma for a week. During the coma, I started having seizures, and the doctors quickly stated that I had epilepsy. From that moment on, I am using anti-epileptic medication. My medication pattern is adapted depending on the seriousness and amount of epileptic seizures.
Can you tell something about epilepsy and how it affects you as a person?
The best way to describe an epileptic attack is that it starts as a strange feeling which rises up inside your body. Physical work, long days, and an irregular sleeping pattern are not beneficial, because these worsen my epilepsy. I can do most daily activities, but for example sports like soccer and tennis are not possible, due to my epilepsy and my left leg that is paralyzed. These are things that I will never recover from. Soccer is too intensive for me and I would risk getting an epileptic attack. The sports I still can do are fitness and mountain biking.
What does a normal day look like for you?
Because I am not allowed to drive myself, my parents have to bring me to work. In general, I find my workdays really exhausting, and I usually spend my weekends watching sports, gaming, and going out with friends.
The SensUs competition works with the medicine Valproate. Are you familiar with this medicine?
No, I use different medications. My medication causes me to be tired very easily and it decreases my concentration and vocabulary. Recently, I had surgery in my brain and since then, it has gotten a little bit better. During the operation, they removed scar tissue, which may or may not help with my epilepsy. This is something I will find out later. For now, it is too early to say.
The theme of SensUs 2020 is: “Measuring epilepsy with ease to manage epileptic disease”. What do you think of this theme?
I think it is very good that the focus of this year’s theme is epilepsy. Epilepsy is underestimated because it is an invisible disease that many people suffer from. We face difficulties every day and are very limited in our daily life. It is good that people are doing research on it because it can help so many people. I sometimes participate in experiments myself, because I like to help with finding new solutions to treat epilepsy.
For the future, it would be really helpful if there would be a way to predict epilepsy seizures, so I could be prepared.