“Because the fight against Charcot disease is hellish, we call for strong political commitment and large-scale action.”

ATWhen Charcot’s disease gained news with the release of the film invincible summer Led by Stephanie Pilonka, the ALS (Amyotrophic Lateral Sclerosis, commonly known as Charcot disease) Research Association (ARSLA) is launching a new national awareness campaign: June Blinks, ALS Challenge Month.

This campaign aims not only to raise awareness of Charcot 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 policy, is unfavorable.

ALS, a rapidly progressive incurable neurodegenerative disease, causes severe disability and complete dependence: the patient can no longer eat, speak or breathe. Its lifespan is then estimated at three to five years. A rare disease (nine thousand cases in France), the frequency of ALS is still equivalent to Parkinson’s disease and higher than multiple sclerosis.

Every day, five people die of ALS, and five others see their lives destroyed by the diagnosis. 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 main issues

Because the fight against the disease is hellish, Arsla requires a strong political commitment with large-scale action to meet the vital and priority needs of people living with ALS. We call on the state to act on four main issues:

– speeding up diagnosis to end patient wandering;

– improvement of 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 being diagnosed. The fight against this wandering will make it possible to reduce the anxiety of patients, start the appropriate care as quickly as possible and increase the chances of survival for several months by quickly creating an organization adapted to the evolution of the disease (social, human, material and medical-social support). It is also necessary to raise awareness and initial and ongoing training of healthcare professionals to refer patients as quickly as possible to specialized neurologists and better targeted medical examinations.