Rewritten article:
Charline Pouillet, from Saint-Pierre-en-Auge (Calvados), has an aggressive mindset of always finding the positive in the negative. This has led her to undertake increasingly challenging physical feats in recent years. Currently working at the 2024 Olympics athlete residence, she has been raising awareness for Huntington’s disease since 2018.
Huntington’s disease is a rare and genetic neurodegenerative disorder that her father, Olivier Pouillet, 51, suffers from. It is estimated that 6,000 people in France are currently symptomatic, experiencing psychiatric, cognitive and motor issues. “Until now, this disease is incurable and the gene was only discovered in the late 1990s,” said Theo Pouillet, the youngest child in the family.
This disease has affected their family for generations. “Our grandmothers and great-grandmothers were affected and died at the age of 59 and 45,” said Charline with caution, under the watchful eye of her mother, Sylvie Pouillet. In 2013, the disease’s first symptoms appeared in her father. However, it took four long years for the family to accept the diagnosis. “Initially, the symptoms were generalized, with uncontrolled kicks. He also became angry. For years, we were in complete isolation, without support, without anyone to tell us what was happening,” Charline recalled. Since then, the disease has continued its progression. Among other things, Olivier struggles to speak and eat, coordinate his movements, and lacks a sense of time.
Sylvie Pouillet, the mother, has questioned the “taboo” surrounding this disease within the family. “We could see that his mother was ill, but once we talked about it, it became the big secret. When we learned the name of the disease and its consequences, it was too late,” she said, feeling “very angry” about the situation. Patients face serious risks because of this secrecy.
Despite the challenges, the Pouillet family finds strength in facing their adversities. From Mont Blanc to Kilimanjaro, they have been fighting against Huntington’s disease, raising awareness and funds for research. Charline, in particular, is determined to find hope in the midst of her family’s struggle. “I want to keep finding the positive in the negative,” she said.