Journalist in the field of health and social affairs, Hélène Delmotte published in 2019 the book “Meeting rare people: their life facing Charcot-Marie-Tooth disease” (Les Influences Éditions). A collective work in which she has people affected by this rare genetic disease testify.
Disability & Society Fund: What is your book specifically about, Madame Delmotte?
Hélène Delmotte: My book addresses life with illness, the lack of treatment and the importance for patients to feel better considered. The testimonies collected also call for the advent of a more inclusive society. We are not yet sufficiently aware of what an invisible disability represents, and Charcot-Marie-Tooth disease may be one of them. The book presents several testimonies from people affected, as well as those of ten personalities, such as Bernard de La Villardière and Aurélien Rousseau.
What exactly is Charcot-Marie-Tooth disease? What are its concrete manifestations?
Charcot-Marie-Tooth disease (CMT) is the most common hereditary neuromuscular disease. 1 in 2,500 people, or around 30,000 people in France, are affected by it, regardless of sex or age.
It is a genetic, progressive disease that affects the peripheral nerves, mainly causing amyotrophy of the calves, forearms and hands.
Although CMT does not affect life expectancy, the level of disability varies greatly and can range from mild difficulty walking to the need for a cane or wheelchair.
Did any testimony touch you in particular?
Yes, that of little Léo who faces very concrete difficulties, in terms of mobility or schooling. There is also that of a young woman, who testified anonymously because she does not dare talk about her illness to her employer for fear of being devalued or perceived negatively. CMT also causes great fatigue, which is not always understood by those around you. These are very complex situations to live with, because shame often prevents those affected from discussing their situation, for fear of economic and social downgrading.
In your opinion, is Charcot-Marie-Tooth disease well taken care of by the French health system?
No, because it remains insufficiently diagnosed. To take my example, I kept falling but no one tried to find out why. When I was in a cast, I couldn't use crutches but no one asked about the lack of strength in my arms… Apart from physiotherapy and orthopedic shoes, there is no treatment for this disease.
What is also interesting is that we now encourage people affected to practice physical activity, even though this was discouraged for a long time. We must at all costs encourage research to better understand the disease.
In your opinion, what role can the ESS sector play?
Like the FHS, which helps many associations to develop very good projects, mutual societies could strengthen their action to reduce the remainder payable by patients, in terms of podiatry and pedicure for example. They could also broaden their communication to raise awareness of disability, and ensure that it is seen as a strength that allows the development of other abilities. The ESS sector has a crucial role to play in promoting these skills.
Why this book?
I am directly affected by the disease, and as a journalist specializing in the health and social action sectors, I felt the need to make my contribution. Many people affected by this disease find themselves isolated. It is sometimes difficult to talk about your disability when sharing information and support – I am thinking of everything that the CMT-France association can provide – is essential.
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