The first attack
She still remembers the first time Julia had an epileptic seizure. She was twelve and on holiday in Italy: “One minute I was brushing my teeth and the next minute I woke up in bed. My family was in panic, but I didn’t realize yet what had happened.” Maxime also remembers her first attack well: “I was younger than Julia, it happened to me when I was nine. It felt like I was being sucked into my bed, a very special experience”
In the beginning, Julia suffered from attacks every month, but thanks to medication these are now much less. “The treatment of epilepsy almost always starts with anti-seizure medications (anti-epileptics). These prevent the attacks. I now take eleven pills a day, which means I now have an attack every three to six months.” For Maxime, her attacks are slightly different: “For me it really depends on the intensity. But it often happens that I have a lot of attacks for one or two days, and then none at all for a while.”
Daily life
The attacks can occur at unexpected times. This means that Maxime and Julia have to deal with it in their daily lives. Maxime: “Because it can always happen, I don’t cycle or drive a scooter, for example. Driving is also not possible. Even walking to the tram alone can be very dangerous.” Julia: “Personally, I don’t want to be guided too much by fear. An attack can always happen, but I feel like: there will always be people around to help.” The extent to which epilepsy affects your daily life varies greatly from person to person. “Maxime and I are so different in our epilepsy. How different it can be in how it expresses itself is difficult for people to understand. People often do not know that, for example, I can be nauseous all day after one attack. Or that I can be tired for a week. However, this is not always the case and sometimes I just feel good after an attack,” says Julia.
Chance of recovery
And the course of epilepsy also differs from person to person. Maxime: “I have been taking 8.5 pills a day for a long time and I still get attacks. There is no specific solution for my epilepsy yet. So I will continue to have seizures for the rest of my life. But there are also people who can grow out of it.” For Julia, there is still a chance that she can go through life attack-free: “After each attack I get a little more medication. If at a certain point I am attack-free for a while, The neurologist can suggest tapering off the medication. In the most ideal situation, I will eventually have no more seizures at all.”
More understanding
The fact that epilepsy can be different for everyone is clearly evident in the story of Maxime and Julia. They both think it is very important that there is more understanding in society and that people gain better insight into living with epilepsy. They contribute to this themselves through their own efforts Youtube Channel and the Instagram account @growingupwithepilepsy. “I wish other people with epilepsy clarity and that they can find out through research what is possible,” says Maxime. Julia adds: “If more research is done into epilepsy and there is more awareness about it, there will automatically be more understanding in society.”
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2024-01-07 16:13:19
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