It was four years ago. Leah Stavenhagen, 29 years old today, who lives between France and the United States, feels the first manifestations of Amyotrophic Lateral Sclerosis, better known as Charcot’s disease.

Loss of balance, difficulty in holding positions during yoga classes… The symptoms seem trivial to him at first.

Leah is then at the dawn of a promising career after a master’s degree at HEC, the prestigious Parisian business school. She likes going out, partying, dancing. ALS, she had never heard of. She is even surprised that her doctor advises her to consult a neurologist, she who is athletic and in good health.

– “The life that changes” –

The diagnosis will be long to make, more than a year to wait before this announcement experienced as an earthquake and “the whole life that changes”.

This Thursday morning, in his apartment in the 12th arrondissement of Paris, his mother hydrates him regularly with a straw. And her husband Hugo asks whether she should put on the ventilation device that helps her get oxygen and speak.

Confined to a wheelchair, she now depends on her loved ones for all activities of daily living.

Still obscure, ALS is a serious and disabling degenerative disease, which leads to death, on average within three to five years of diagnosis.

It results in a progressive paralysis of the muscles involved in motor skills and also affects the production of sounds and swallowing. Most often, it is the attack of the respiratory muscles which causes the death of the patients.

Affecting around half a million worldwide, 5,000 to 7,000 in France (with 1,000 new cases per year), ALS affects both sexes with a slight male predominance. It occurs in most cases between the ages of 40 and 70, the average age being 60, but it can occur at any age in adults.

Pathology with dramatic consequences, its causes are still poorly understood and the therapeutic arsenal to combat it is limited. There is currently no treatment to cure it.

Only one drug, riluzole, is currently available but only extends life expectancy by a few months. Many clinical trials have also been attempted for years.

After a rapid deterioration of her condition, Leah began an experimental treatment two years ago in the United States, based on TReg (regulatory T lymphocytes) cells from umbilical cord blood, supposed to fight diseases causing inflammatory activity.

Since then, she has the feeling that the disease is progressing more slowly, but no scientific results have yet proven the effectiveness of this treatment.

– Multiple mechanisms –

“ALS is a complex and very heterogeneous disease, of genetic origin for 10% of patients”, explains Pierre-François Pradat, neurologist at Pitié-Salpêtrière in Paris.

For the others, “a multitude of biological mechanisms, different from one patient to another, are involved: the role of inflammation, an accumulation of proteins or a deficit of energy production in the neurons”, he adds. .

Because the causes are multiple, it is difficult to develop a treatment that all patients can respond to.

“We are now moving towards the use of biomarkers which will make it possible to better understand the mechanisms involved for each patient and to create more targeted treatments”, hopes Claude Desnuelle, vice-president of the Arsla association, which helps the sick ones.

Today, Leah Stavenhagen wants to raise awareness to accelerate research. She created an association (Her ALS story) bringing together young women diagnosed before their 35th birthday.

She also publishes a book telling her story: “I would like to dance again” (with Sarah Gaudron, Archipelago editions).

“It’s very important to say that this disease can affect anyone, not just the elderly or Stephen Hawkings” (the famous physicist, who suffered from a rare form of ALS for 55 years, editor’s note), she believes.

“Often families don’t talk about it much because all their energy is consumed by the disease,” she adds.

Refusing to sink into pessimism, she hopes today “to still travel”, “enjoy life”, “stabilize the disease” and then, why not, “cure”.