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Leah is 29 years old and has had Charcot’s disease for 4 years, a neurodegenerative disease that causes progressive muscle paralysis. For Brut, she recounts her daily life.
About 4 years ago, while a student, Leah discovers that she has Charcot’s disease. She is now in the United States with her husband, to follow a treatment that does not exist in France.
“As far as I know, it’s produced only in Texas and authorized only in this hospital, in Columbia. It’s very difficult to say if it works or not because I’m the only patient, but I think it has had effects.
To talk about her disease, Leah created her own association “Her ALS story”, composed of a group of young women who were diagnosed with the disease before their 35th birthday. She also wrote a book, “I would like to dance again”.
“Talking about it is very important, because this disease is part of my identity. 4-5 years ago, I would never have imagined having the opportunity, the chance, even the need to write a book”
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