In an interview, Ève Gilles, Miss France 2024 reveals the rare neurological disease she has suffered from since childhood: paroxysmal dyskinesia, which is characterized by attacks of sudden movements.
- Ève Gilles, Miss France 2024 reveals the rare neurological disease she has suffered from since childhood: paroxysmal dyskinesia.
- This is characterized by attacks of sudden, involuntary and repetitive movements.
- There are four subtypes of paroxysmal dyskinesia that vary in treatment.
“It was an illness that took up a lot of space for me when I was little, and I didn’t want it to define me as a woman (…). Today, what pushes me to speak out, (…) is really to be a hope for these people who have invisible illnesses and who don’t know how to react, who are afraid of dreaming too big”. It is in these terms that the video begins Konbini in which Ève Gilles, Miss France 2024, reveals that she suffers from paroxysmal dyskinesia.
Paroxysmal dyskinesia: “These are movements that I cannot control”
In this video of approximately five minutes, the 21-year-old young woman shares her story and her daily life with the pathology. Paroxysmal dyskinesia is a rare neurological disease characterized by attacks of sudden, involuntary and repetitive movements. “It could be an arm moving inwards, it could be my whole body, explains Ève Gilles. It can even be on the face. That’s why often, when I have a crisis, I close my eyes. […] I don’t want to be seen like this”.
Ève Gilles felt the first symptoms around the age of eight. The diagnosis was made at 14 years old and the young girl immediately began treatment. “After I turned 19, I realized that I was having a little less seizures, so I reduced the doses a little, she explains. Little by little, we are moving towards a total reduction”. In some patients, dyskinesia can also be associated with another neurological disease, such as Parkinson’s or Huntington’s, or with the use of certain medications.
“I have an invisible illness, but I know how to live with it. And I live very well with it, indicates Ève Gilles, who still suffers from seizures. These are movements that I do not control for a certain time, between 25 and 40 seconds”.
Paroxysmal dyskinesia: there are several forms of the disease
There are four subtypes of paroxysmal dyskinesia:
- paroxysmal kinesigenic dyskinesia (PKD): attacks are triggered by a change of position, fright or sudden movements;
- paroxysmal non-kinesigenic dyskinesia (PNKD): involuntary movements can occur due to stress, fatigue, drinking coffee or alcohol, or even menstruation;
- paroxysmal exercise-induced dyskinesia (PED): these are painless attacks of dystonia in the extremities, triggered by prolonged physical activity;
- infantile convulsions-choreoathetosis syndrome (ICCA syndrome): the disease is characterized by the appearance of convulsions during the baby’s first year of life as well as choreoathetotic dyskinetic crises during childhood.
Depending on the subtype of dyskinesia, the treatment is different and adapted to the patient’s needs.
If Ève Gilles has remained silent until today, it is because she did not want any confusion between her illness and Miss France. “I didn’t want to be elected because “oh the poor little girl who has this diseaseshe explains. I didn’t see my illness at all as a defect or something that defined me, for me it was really more of a strength that made me grow up perhaps too quickly.“
