Lunan. Multiple sclerosis: she launches a kitty for treatment in Russia

the essential
Suffering from multiple sclerosis, Myriam Rodrigues was selected for treatment in Russia. Residing in Lunan, this mother decided to open a kitty online to finance her possible recovery.

Put on your pants, take a shower, go shopping, take care of your daughter … Everyday gestures are a little more burdensome for MyriamRodrigues. At 43, this Lunan resident has suffered from multiple sclerosis for more than twenty years. Tired of endless treatments and repeat medical appointments, she turns to the last possible remedy for treatment: stem cell autograft (see box). The only downside: this treatment, which has been used successfully in Russia and Mexico for some twenty years, is still considered experimental in France. More determined than ever, she is sending her case to Maximov Hospital in Moscow for treatment by Dr. Fédorenko, the world’s benchmark for the method. If several testimonies confirm a significant success rate, the cost of the procedure, almost € 50,000, is however very high. Too much for Myriam who therefore decided to create a kitty online on the GoFundMe platform.

When Myriam discovered her illness, she was 21 years old and studied pharmacy. “I stayed for many years without knowing what I had. This is a common pattern in patients,” she says. “At the end of my studies, I felt very tired and tingling. Then one of my eyes lost sight. But 22 years ago, we did not have the same definition of sclerosis. The doctors concluded that it was an inflammation of the nervous system. ” Myriam has no consequences of this first alert. For ten years, the symptoms remain in the shadows. The young woman becomes pregnant and gives birth to a baby girl. That same day, a new crisis leaves no doubt: it is multiple sclerosis.

From then on, she must learn to live with an illness that is occupying more and more space. Little by little she is forced to give up her habits: gardening, DIY, piano … For six years, the disease has become progressive. In 2017, his neurologist offered him a new treatment: qizenday. “The problem is that the rare side effects were not yet listed. I was the second person hospitalized in emergency in Purpan because of this drug,” she deplores. Sclerosis is starting again. Walking becomes difficult, driving impossible. “I have lost all autonomy. Disability has taken my daily life,” says the mother.

For several months, she has been hearing about a stem cell method used in Russia and Mexico. Despite the recommendations of her neurologist who considers it too experimental, she nevertheless continues her research. On the Internet, she comes into contact with patients who have followed her: many are now in remission. Exchanges that eventually convince her: she sends her file to Paris, but it is rejected because of her handicap deemed too high. With her back to the wall, she decides to contact the Russian hospital. This time, the request is successful: the start of treatment is scheduled for June 15, 2020.

It was to cover hospital and travel expenses that she launched her kitty two weeks ago. With it, Myriam Rodrigues also wants to make her patient and witness voice heard. Denounce a medical system in which “too many patients are abandoned”: “For the French pharmaceutical industries, patients are hens with golden eggs”.