This is an initiative that was born last year, when the coronavirus disrupted the ways of living, expressing oneself, engaging, mobilizing around a cause. It will be renewed this year. On February 14, on the occasion of the International Epilepsy Day, several public buildings in the region, including the municipal theater of Haguenau, the town halls of Sélestat, Molsheim, Wissembourg …, will be illuminated in purple, a color associated with epilepsy, this chronic neurological disease caused by abnormal electrical activity of the brain. “A disease unknown and surrounded by many prejudices,” says Tiphaine Ligutti, departmental delegate of the Bas-Rhin Epilepsy association-France – to which are also attached the departments of Haut-Rhin, Vosges and Moselle (*).
“We thought it was ocd”
Late diagnosis, attitude of “rejection”, treatment at first “unsuitable” … Tiphaine has known “all this”. Epilepsy of the Alsatian, settled in the Lower Rhine, began at the age of nine, with “uncontrolled” tremors of the upper limbs. “We thought it was OCD,” she says. Until one day she collapses on her plate in the middle of lunch, before convulsing. This is followed by an “obstacle course”: MRI, CT scan, electroencephalogram, blood test…
Once the diagnosis is made, the disease of the young woman, now 22 years old, is first treated with a treatment that amplifies her seizures. “I was having up to two seizures a day and 50 absences, that is, brief losses of contact with reality,” she explains. These manifestations are some of the many ways in which the disease is expressed: “There are visible signs, such as tremors, involuntary movements, muscle rigidity, falls. And there are also little or no visible signs such as absences, memory disorders, difficulty concentrating, auditory or visual hallucinations … “.
“Often we are silent, we hide our illness”
At school, she is the victim of an attitude of “rejection”. “I was getting hit because other people were afraid of my seizures, they didn’t understand them, thought it wasn’t normal. ». For five years, thanks to a treatment that has been re-evaluated, Tiphaine has been “stabilized”. “I haven’t had a seizure since then,” she says. And despite the side effects of it (“Great fatigue and mood disorders for me. “), she managed to win other “fights”: pass her driver’s license (“To register, you have to justify that you did not have a seizure for a year,” she explains) and find a job (“Often we are silent, we hide our illness for fear that it will be a hindrance to hiring,” says the nurse.).
According to the Epilepsy-France association, epilepsy affects more than 650,000 people in France (1% of the population).
(*) Contact the departmental delegation of the Epilepsy Association-France, by e-mail: [email protected]
