ATwhen Charcot’s disease made the news with the release of the film Invincible summer, directed by Stephanie Pillonca, the Association for Research on ALS (amyotrophic lateral sclerosis, commonly known as Charcot’s disease) (Arsla) is launching a new national awareness campaign: “June bursts, a month to challenge ALS”.
This campaign not only aims to raise awareness of Charcot’s disease and raise funds for research, but also to highlight the willingness of people with the disease to lead the fight against the disease – and this despite public health policies. unfavorable.
ALS, a rapidly progressive incurable neurodegenerative disease, leads to severe disability and total dependence: the patient can no longer eat, speak or breathe. Its life expectancy is then estimated between three and five years. A rare disease (nine thousand cases in France), the incidence of ALS is however equivalent to that of Parkinson’s disease, and higher than that of multiple sclerosis.
Every day, five people die of ALS, while five others see their lives shattered when the diagnosis is announced. Each of us has a one in three hundred chance of developing ALS – the prevalence of which, according to some European studies, will increase by 20% by 2040.
Four key issues
Because the fight against the disease is hellish, Arsla requires a strong political commitment with large-scale actions to meet the vital and priority needs of people with ALS. We urge the state to act on four key issues:
– accelerating diagnosis to put an end to patient wandering;
– improving disability compensation;
– strengthening the coordination of the care pathway;
– improving the evaluation and financing of new therapies.
Today, a patient has to wait about ten months before a diagnosis is made. Combating this wandering would make it possible to reduce the anxiety of patients, to begin appropriate care as quickly as possible and to increase the chances of survival by a few months, by quickly setting up an organization adapted to the evolution of the disease ( social, human, material and medico-social assistance). Also, increasing awareness and the initial and continuing training of health professionals is essential to direct the patient as quickly as possible to specialized neurologists and better target medical examinations.
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