June 2, 2016.
In order to educate the public authorities on Charcot’s disease, which still has no treatment, Gilles Houbart, himself ill, has chosen to travel a long journey in a wheelchair.
Raise public authorities’ awareness of Charcot’s disease
Traveling the distance between Savoy and Paris in an electric wheelchair, such is the challenge that Gilles Houbart has set himself, to raise awareness of Charcot’s disease from which he suffers. A journey of 788 kilometers, at an average of 15 km / h and in 13 stages. It is above all about ” make the population and the medical profession aware of this incurable disease which gradually degrades the muscular and nervous functions of the patient and which can affect everyone », Specifies the association The long road for people with ALS (amyotrophic lateral sclerosis), which organizes the event.
Left on May 20, Gilles Houbart will end the adventure in Paris on June 11, ” by a large demonstration that will go from the Pitié Salpêtrière to the Ministry of Health “. According to the association, it is urgent to develop research around this neurological disease which affects 3 to 4 new people every day.
More communication and more resources for research
Charcot’s disease is incurable and patients’ life expectancy is 2 to 5 years. The exact causes of this condition are not known and doctors are struggling to diagnose it.. In Savoie, the region of Gilles Houbart, “ 9 out of 10 doctors would not think about ALS if it had the usual symptoms (night cramps, involuntary muscle twitching, stiffness at rest) “. ” My new GP must have searched the internet in front of me while apologizing », He testifies.
In parallel with this extraordinary adventure, a petition was launched to ask for the establishment of a national communication campaign on the disease, in particular for the attention of the medical profession, and the strengthening of budgets devoted to research. The petition will be delivered to the Minister of Health, Marisol Touraine, on June 11.
