Source : Social History of Medicine, Volume 11, Issue 2: August 1998
Jean Demos
Building the French muscular dystrophy association. The role of doctor/patient interactions
M-A Bach
Unite Inserm 158 ('Savoires et pratiques dans le champ medical: histoire sociologie, psychanalyse'), Hopital Necker-Enfants Malades, 149, rue de Sevres, F-75743 Paris Cedex 15, France, e-mail:
The process of creating the French Muscular Dystrophy Association (AFM) is analysed through the interactions between the medico-scientific community on the one hand, and patients and their families on the other, from the 1950s to 1986. Each stage of its development was characterized by a particular mode of co-operation between lay people and doctors. Starting in 1958, the Association built a close relationship with a single partner, Jean Démos, a paediatrician and biochemist who developed a new vasodilation therapy based on his controversial vascular theory of muscular dystrophy. Around 1966, some AFM members, disappointed by Démos' treatment, decided to collaborate with other specialists, primarily neurologists, but channelled most of their resources in social action. Two other organizations were then created around Dr Démos: the first (Union de Myopathes de France (UMF) acted as a 'grass-roots organization' for maintaining 'therapeutic orthodoxy' among patients and supporting his research through political lobbying; the other, composed of a handful of wealthy individuals, raised private funds for his laboratory. In the late 1970s, some UMF members questioned Démos' approach. They united with AFM to form a single association and created a Scientific Council representing all French groups interested in neuromuscular diseases. The co-operation established between these two collective partners proved to be most fruitful for both parties.