At 26, Leah Stavenhagen was diagnosed with amyotrophic lateral sclerosis. While the symptoms quickly set in, a glimmer of hope appeared across the Atlantic where the young French-American was offered the chance to experiment with a new treatment for this previously incurable disease. She tells us about her journey.
- After having the first symptoms in her feet, Leah Stavenhagen, a young French-American, learned at the age of 26 that she had amyotrophic lateral sclerosis.
- A year later, her disease has progressed rapidly. The patient has difficulty walking and breathing. Today, aged 31, she is in a wheelchair.
- Followed by a neurologist in New York, the founder of an association was able to test a new treatment based on T-reg stem cells from June 2020 to January 2022, which according to her, “slowed the progression” of Charcot’s disease.
“The first symptoms appeared in 2018. It all started in my feet. I felt like I was less stable and I fell often. When I was jogging, I felt like my ankles were broken. Every time I ran, I told myself that I had to buy new sneakers,” “Recalls Leah Stavenhagen, who was 25 at the time. In October, she decided to see a GP because she felt she needed some physiotherapy. “She wanted to test my knee reflexes. We quickly realized that after tapping my knee with a small hammer, there was no reaction.” Worried, the practitioner referred her to a neurologist at Pitié-Salpêtrière. “I didn’t understand why I had to go see this specialist, because I thought the problem was with my feet and not my brain!”
ALS: “In my case, the disease came out of nowhere, it is sporadic”
In 2019, she went to see the neurologist in question. “I was really not convinced. I dragged my feet. The specialist was not very friendly, I felt like I was wasting her time. She asked me to do several tests, like standing on tiptoes, and gave me a prescription for a blood test. I let it drag on for a while before my family insisted and pushed me to do the tests.” Once the results were received, the young master’s graduate returned to see the expert. “She told me I had amyotrophic lateral sclerosis (ALS). I had no family history of it. So in my case, the disease came out of nowhere; it’s sporadic.”
“I had never heard of it.” The neurologist explained to him that this condition, known to the general public as “Charcot’s disease”, was a serious and disabling neurodegenerative pathology. This disease results in progressive paralysis of the muscles involved in voluntary motor skills. It also affects speech, swallowing and breathing. “The health professional, who had strangely become more friendly, told me that there was not much that could be done about this disease, because there is no curative treatment and the life expectancy of patients is on average three to five years.”
Difficulty walking, weak diaphragm: “It can be scary to face death”
Not having yet fully assimilated all this information, Leah asks her if she should cancel her upcoming vacation with her friends. “She advised me to do it. That day, I understood for the first time that it was serious.” On her way home, the twenty-something researches Lou Gehrig’s disease on the Internet during her subway ride. She discovers that the condition affects older people, between 50 and 70, and finds photos of celebrities who have suffered from it. “Seeing and reading all this, I began to understand that this disease was not so rare and that it can affect anyone. I also became aware of its seriousness and began to think about my life in a wheelchair.” However, the Parisian tries to stay positive.
In 2020, while she was working as a strategy consultant, she was arrested and could no longer carry out any professional activity. “My illness progressed very quickly. Discomfort had set in in my hands and arms. I started having trouble walking. My diaphragm became very weak, so I had to be on a ventilator. Although I considered myself lucky to still be able to speak and eat, I realized that my tongue was getting heavier and heavier,” explains the young French-American woman who is now 31 years old and in a wheelchair. “It was hard to accept because it can be scary to face death, but fortunately I was well surrounded. My family, my friends and my husband were there for me. I never felt abandoned,” adds the patient who was followed by a psychologist at the beginning of the illness.
Charcot’s disease: “the first patient to benefit from T-reg stem cell injections every month”
Faced with her various symptoms that were becoming more and more disabling, Leah’s father, a researcher in the pharmaceutical world, decided to move up a gear and put her in touch with a renowned neurologist in New York. After the first meeting, everything happened very quickly. “The American doctor offered me to experiment with a new treatment based on T-reg stem cells on a compassionate basis. I obviously didn’t refuse, I felt really lucky to be the first patient to benefit from injections every month.” The goal of treatment? To slow the progression of amyotrophic lateral sclerosis.
In 2022, “This was unfortunately the end of the treatment that began in June 2020. To this day, it is not known whether it was effective. A clinical trial is underway to learn more. However, I have the impression that the experimental treatment has slowed the progression of the disease, which is now rather stable. I hope that one day, all patients will be able to have access to it,” exclaims the patient who insists on the importance of supporting research and who created his association intended for young women suffering from Charcot’s disease.
