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In a Konbini video, actress and stand-up artist Doully talks with great self-mockery about the handicap she suffers from: Charcot-Marie-Tooth disease. A rare neurological disease that cannot be seen at first glance, but which makes her suffer a lot.
It is because she has suffered since childhood from feet that look like “ginger roots” as she calls them, that comedian Doully, known for her mocking voice, is referred to a neurologist. It was about 5 years ago, and the diagnosis then falls, relentless. This is Charcot-Marie-Tooth disease, a degenerative and disabling neurological disease affecting mainly the hands and feet, which has no treatment to slow down its progression. “I don’t have a reflex, I have trouble holding a pen (…) and the most painful thing is the back pain, that’s why I do stand up, hanging on my microphone like a stage cane or leaning on a high stool” she laughs.
A handicap that is hardly seen and yet
The artist then enumerates facing the camera the absurd situations she has to go through every day: the queues during which she cannot stand up, or the seats dedicated to the disabled in public transport. “Me the thing, it is that as my handicap is not seen, when I leave my card, one thinks that I falsify the thing. Sometimes I am told “no, I prefer to give my place to this old lady over there”.
If Doully tells her anecdotes with humor, she still wants to send a message about the place of disability in society. “In some countries, when you show your card, you become the Queen of England. Here you have to show your card and explain “this is the reason why I ask to pass you” which she considers a humiliation and a reminder of her pain every time.
Charcot Marie Tooth disease, a syndrome without treatment
Charcot-Marie-Tooth disease (CMT) is an inherited sensory-motor neuropathy: it is a disease of the peripheral nerve that gradually leads to a decrease in muscle strength and sensitivity. It can be passed from parents to children through 80 different genes.
Charcot-Marie-Tooth disease affects between 30,000 and 50,000 people in France (i.e. 1 person affected in 2,500).
It induces:
- Gait disturbances, and deformity of the feet;
- Difficulty in standing, with balance disorders;
- A decrease in sensitivity in the hands and feet, with the appearance of pain;
- Involvement of the hands, after several years;
- Sometimes respiratory damage, vocal cord damage, deafness, foot ulcers.
No treatment is currently possible to curb the disease, but clinical trials are underway. For the time being, care is based on: regular practice of a sport, orthopedic care, pain management, and genetic counseling.
Doully recommends music to relieve pain.
“I stopped morphine, I do physio, I don’t hide my handicap, but saying that I’m in pain changes absolutely nothing. What awaits me I don’t know, I don’t want to know, I will see it at some point”she concludes, a philosopher.