Still little known, epilepsy, a chronic brain disease, affects about 1% of the French population. For Aurelie, a resident of Bréseux (Doubs), epilepsy developed after meningitis. she says.
“In the beginning, I had ten attacks a day that lasted between 10 and 45 minutes”, Remembers Aurelie. This Franc-Comtoise woman became epileptic following meningitis. Doctors put her in an induced coma to try to cure her. Three weeks after awakening, epilepsy began. “The doctors told me it was a side effect.” Absolutely– She.
Convulsions manifest themselves in him “Deafness“In the head: “I have five seconds to get down or I’ll fall”. Five seconds is too short. “You don’t pay enough attention, lose two seconds and can’t reach the sofa”, explains the forty-year-old. In her fall, Aurelie has already broken her nose and arch.
For safety, Aurelie wears a remote alarm on her wrist so she can alert her loved ones in the event of a fall. When she takes her dog outside, she always makes sure to stay a few meters away from the house. She doesn’t have time to call when there’s an emergency. Due to exhaustion, she also delivered her food.
After undergoing numerous treatments, he now takes three medications a day and has a vagus nerve stimulator. “It stimulates the nerves in the neck with electrical impulses”. This former social worker doesn’t know that her treatment has side effects. She feels very tired and has trouble finding words, but it could be that the attacks are triggering this.es effects. Currently, she has an average of five seizures per month that last about 45 minutes.
His illness drove him into great solitude. The forty-year-old had initially retired within months due to disability. Her partner did all he could to support her during the diagnosis, but they separated. Aurelie also lost many friends.
Her inability to drive also plays a role in her distance from the people she knows: “It’s not discrimination, it just happens,” she adds. His parents and his sister are still there for him. His father is present every day. He visits her once or several times a day, “Because otherwise life is long”, she whispers. Aurelie also has a 15-year-old son in shared custody.
To combat loneliness, these Dubs residents participate in community activities. Since this year, she has joined the furniture refurbishing Ray Bon Association in Mache. “They all know about my illness. There is always one to come and pick me up and bring me back. she suggests. She has not yet had any seizures there: “Normally, emergencies happen at the end of the day, around 5pm and association activities take place in the afternoon”.
Aurelie has also benefited from psychological support for over ten years. “My father is very present, but he’s still different. I can’t do what I want when I want.” She believes
Attacks at the end of the day are common. But there are also some that can be triggered by strong emotions: “If I get a little angry or if I feel sad because I can’t find the words anymore for example, it can be triggered”. This can happen at any time: “There is no regularity in my illness”. Seizures can also be triggered by too much light or too much noise. For going out, Aurelie wears sunglasses.
She regrets that the disease is so little known. When she gets angry in public, people get scared and run to hide her. “It’s impressive, that’s for sure, She admits. I have convulsions and I hear noises”. However, on a daily basis, living with his reactions is difficult.
According to Epilepsy-France, 1% of the French population is affected by this disease. “100 new people with epileptic seizures every day in France”, reports Jean-Francois Donze, Departmental Representative of Epilepsy-France for Dubs and Territoire de Belfort. “20% of the population is prone to seizures”, He adds.
Epilepsy is the second most common neurological disease in France after migraine. It is still subject to many misconceptions. “We can think that people make films and this disease is still associated with witches”, Jean-Francois Donze notes. He defined epilepsy as an arrhythmia of brain function: “The brain will deteriorate for more or less long moments and more or less frequently during the day”. In addition, the patient experiences an absence of epilepsy. “There will be no shaking. The person will be absent for a while. That explains.
Today, ECG (electrocardiogram) makes it easy to diagnose epilepsy, but finding the right treatment can be complicated: “In these cases, surgery may be a possibility, but sometimes surgery is not an option.”.
The disease can be caused by genetic or environmental factors. It can also follow brain damage or taking certain drugs. Sometimes no clear cause can be found.
Epilepsy-France aims to raise awareness and communication about the disease. The association is on call and answers questions from callers. He can help prepare the MDPH (Departmental House for Disabled Persons) file and refer you to social workers. Due to a lack of awareness, people with epilepsy may also experience barriers to employment: “We have lawyers in the association to help in extreme cases”.
If you witness a seizure, leave the person in one place for the duration of the seizure, unless there is immediate danger. Do not try to stop aggressive movements and do not put anything in your mouth.
Call emergency services or 112 if the seizure lasts more than five minutes. If the person is injured, has vomited, or has a severe headache after the seizure. If the person has a second seizure before regaining consciousness and if the seizure occurs in water.