On this World Day of Parkinson’s disease, the France Parkinson association is launching a major awareness campaign to inform the general public about this disease which is still too often stigmatized and misunderstood.
On this World Parkinson’s Day, the key word is “communication”. The France Parkinson association has taken all the measures: posters and TV spots are planned throughout France to raise public awareness of this disease, which is too little known. In addition to this, no less than 38 information and patient support events are organized by its volunteer committees. The objective: to remind that “too often, one of the battles of the sick is not the one we believe”. In other words, more than the symptoms of the disease itself, the big fight is the way others look. Stigmatized and misunderstood, the patients “no longer want this look full of prejudice and incomprehension” on them, explains France Parkinson in a press release.
Misunderstood symptoms
“While medical progress and treatment have made it possible to reduce certain symptoms of the disease, the suffering of patients does not decrease, in particular because of “the perception that others have of their disease, and therefore of them”, explains France Parkinson: “This must change, just as care must evolve to make more room for personalized medicine and local therapeutic education”.
Indeed, Parkinson’s disease is still too often assimilated to an attack exclusively related to old age. Its manifestations and symptoms are the subject of “deep ignorance and prejudice”, insists the association, which affect the quality of life, but also the care of patients. The symptoms can even sometimes be minimized by the close entourage, who struggle to recognize and understand them. Worse, they can sometimes be confused with cognitive or psychiatric disorders. The association reminds us: “The benevolence of the way patients look has a major impact on the perception they have of their disease”. Proper information about this disease is therefore an essential issue for patients to be able to live better with it.
Personalized medicine: the key to fighting disease
Where is the research? As a reminder, Parkinson’s disease is a neurodegenerative disease. This means that it is the result of the slow death of neurons in the brain and not just any neurons: the dopamine neurons of the substantia nigra of the brain. Since these neurons are involved in the control of movements, people affected by the disease have increasingly rigid, jerky and uncontrollable gestures. Today, the treatments available make it possible to reduce symptoms, slow the progression of the disease and live with Parkinson’s for several years.
Nevertheless, to be able to treat patients even better, Didier Robilard, President of France Parkinson, recommends personalized medicine: “The concept of personalized medicine, or tailor-made medicine, is closely linked to the idea that a “one-size-fits-all” treatment cannot satisfy everyone’s needs and must be personalized”. According to the specialist, the personalization of care is particularly recommended in Parkinson’s disease “because it is a complex pathology that is very individual in its expressions”. Personalized medicine consists of “identifying biological factors, partly genetic, to enable us to prescribe to the patient who is in front of us the treatment that is both the most effective and the safest for him”. France Parkinson therefore claims a generalization of this good medical practice, particularly adapted to this pathology.
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