“I don’t want to be seen as a sad girl. Disability, we are happy, we are like everyone else“.
The tone is set. Behind this frank smile, Louna, 21, hides rare strength. This young woman, suffering from Friedreich’s ataxia, a genetic and neurodegenerative disease, leads a daily battle without ever giving in to discouragement. Coming from Nantes with her parents and her sister, she spoke in Paris, in front of the Biogen teams, as part of an awareness campaign on the occasion of International Ataxia Day.
Alongside her mother Cathy, her father Didier and her sister Léa, Louna embodies the voice of a generation that refuses resignation. Diagnosed in 2017 after six long years of medical wandering, she transformed this ordeal into a driving force for action and speaking out.
“It’s a complicated ordeal that will remain marked forever”
It all started with discreet signs: falls, difficulty writing, repeated discomfort.
“We spent a lot of time in the emergency room, in hospitalization, without understanding what was happening to Louna“.
For a long time, doctors moved towards a psychological hypothesis. The young girl is even undergoing treatment for anorexia which does not exist.
“I didn’t feel understood“.
The turning point comes thanks to the view of an endocrinologist from the Nantes University Hospital.
“Why does your daughter hold on to you to walk?“
A few months later, the verdict came: Friedreich’s ataxia.
“It is a complicated ordeal that will remain marked forever” remembers Cathy.
Louna remembers this moment with disarming frankness:
“I told myself it was a little gastro, that it would go away in two weeks. Well no“.
A rare genetic disease often diagnosed too late
Friedreich’s ataxia is a rare genetic disease that affects the central nervous system. It causes a progressive loss of coordination, balance and speech, sometimes with cardiac complications. In Europe, around one in 50,000 people suffer from it.
The diagnosis often takes a long time to establish: 75% of patients wait more than two years before a doctor puts a name to their symptoms.
“We could have taken care of it more quickly” confides Cathy, still moved by these years of doubt.
“I want to be independent, I don’t want to ask my parents for everything”
Today, Louna juggles between her studies, her care and her commitment to social networks. Under the pseudonym @warrior_of_ataxiashe shares her daily life with humor and self-deprecation. Its objective: to change the way people view disability and give visibility to rare diseases.
What clicked it? A prize pool launched on TikTok to finance an electric wheelchair worth 35,000 euros. In one night, she collected 16,000 euros.
“We do not have the means to finance medical equipment like this chair. I said: I want to be independent, I don’t want to ask my parents for everything“.
Since then, she has addressed her community with frankness and humor.
“I like self-deprecation, it allows me not to see the illness in black“.
In her videos, she does not hesitate to be ironic about the clichés, even those who stare at her.like she was drunk” at school.
A daily life punctuated by care
But behind the laughter, reality remains demanding.
“Three physiotherapy sessions per week, one speech therapy, one occupational therapy… not to mention the 200 medications I take every week“.
With more than 150 medical appointments per year, Louna lives to the rhythm of care.
His mother, Cathy, made a radical choice: quit her job to be by his side.
“I stopped my work so that Louna could have the best possible life despite the illness“.
A choice of the heart, assumed without regret. Because despite the sacrifices, the family moves forward united.
“I think illness brought us closer together. We are a shock team“.
Léa, the big sister, often participates in the filming and editing of videos.
“I have a bond with Louna as if we had a much smaller gap“.
“I truly believe that one day the disease will be defeated”
A BTS student, Louna continues her journey with determination.
“I believe so deep down that one day we will be able to get rid of the disease.“.
She transmits this confidence to her community, to those close to her, and to all those who listen to her.
But for Louna, the essential remains elsewhere.
“We need to talk about this disease. The more it is known, the more it will resonate with everyone.“.
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