In 2012 the “Espace de réflexion éthique” of the Ile-de-France region surveyed the French population on their knowledge of Alzheimer’s disease. This year, they focused on the position in our society of neurodegenerative diseases such as Parkinson’s and multiple sclerosis.
For this, the TNS Sofres institute analyzed on-line conversations on these topics and interviewed a representative sample of 1004 people in France.

It appears that 7 out of 10 French people believe they have a good knowledge of Parkinson’s disease, while only 5 out of 10 can say the same for multiple sclerosis. Unfortunately, 9 out of 10 people see at least one good reason not to reveal their illness, in particular those in management positions. One person in every 4 would even hide the fact that they had Parkinson’s to avoid mockery.

Ipsos-Espace-Ethique-Parkinson-SEP

The volume of on-line discussions on these illnesses seems quite low, and has decreased since 2007. What is even more worrying, the survey revealed that comments on the social networks tend to be mocking, in particular on Twitter. Of course we must be wary of these trends; however it is important not to condemn the users of these social networks, composed of widely diverse populations from teenagers who are not always aware of the meaning of their words to well read health professionals.

There are also great community initiatives such as sep-ensemble.fr, launched by Sanofi at the end of September, which is both a source of information and a discussion forum on multiple sclerosis. There are also numerous specific blogs by societies, patients or their friends and relations which are interesting testimonials.

Please feel free to share your point of view on this subject.

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