TESTIMONIAL – Justine, 24, has suffered from epilepsy since the age of 17. On International Epilepsy Day, she agreed to testify.
Justine, 24, dreamed of working with disabled children Justine
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LE FIGARO. – How did your illness start?
Justine. – It was the morning of December 24, 2012. When I had just gotten up, I fell suddenly and passed out. My father, who was in the house, had the reflex to put me in a lateral position before calling the firefighters. When I woke up in the emergency room at Poissy hospital (in the Yvelines), I did not understand what was happening to me. In the evening, I was allowed out of the hospital to celebrate Christmas with the family, but I was exhausted. So I decided to stay there. At that time, the doctors told me that it may be epilepsy but that to be declared epileptic, I had to have a second attack. What happened two weeks later, in class (Justine was then first, note). Doctors believe it may be the result of fetal distress at birth, but they are not sure.
You were quickly treated. Did the drugs work well?
I have drug-resistant epilepsy, which means that I do not respond to most drugs. I started by trying several treatments but none of them worked. One of them even made me hysterical. It was while going to a symposium of the French Foundation for Research on Epilepsy (FFRE) that I heard about the vagus nerve stimulator. It is a device that is implanted under the armpit and that sends electrical shocks to the brain very frequently to reduce the number of attacks. I decided to take the plunge and have this implant placed. Doctors said the patients got used to it in three months. Me, it took me two years during which I chained back and forth to the hospital to settle my battery. In the end, it really reduced the frequency of seizures and it reduced my recovery time. Above all, I stopped having absences.
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Was your disease under control then?
No. Two years ago, I had 7 fits in a week. It was the trigger. I went back to the neurologist to ask him to find a solution. He offered to try a new drug, I was already taking 11. The result was spectacular. After two weeks, my seizures stopped completely. But if I forget my medication, I take one during the day. On the other hand, I always make absences but they are a little different from what I did at the beginning. It’s like my head suddenly freezes, there’s nothing I can do. It makes me want to bang my head against the walls. It’s extremely tiring.
Has the look of those around you changed?
I always wanted to do like the others despite the illness. I often went to high school with bruises on my face because of falls due to seizures. Some students were a little harsh. For example, I was asked if my disease could be transmitted and some were even afraid to get in the car with me. On the professional side, it’s not easy either. I did a professional baccalaureate in “personal service”, followed by training to be medico-psychological help in order to work with disabled children. But often, my internships went bad. My colleagues were generally not benevolent. The worst part was when I had a seizure while I was feeding a child. So I gave up on the idea of working in the medical sector.
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Did you seek help?
This illness made me lose self-confidence. On the advice of my parents, I agreed to meet a psychologist who taught me how to manage my illness and the eyes of others. I also had a great feeling of injustice because my twin brother has a perfectly normal life. And for the past two years, I’ve been doing speech therapy sessions every week. With each attack, the brain is damaged. I quickly realized that. I lost a bit of my language, memory, logic … In a test I did recently, I had trouble reciting the alphabet or reproducing a simple drawing. I also have major concentration problems.
What do you aspire to today?
I know this disease will follow me all my life. But I want to work, it’s very heavy to stay at home. I got involved a lot with the French Foundation for Research on Epilepsy. I’m about to do a new training in office automation. I can’t wait for things to happen in my life.
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