Peter AshleyEuro-DyMA, (European Dystrophia Myotonica Association) is a non-profit European patient association, entirely dedicated to Myotonic Dystrophy type 1 (Steinert disease), and type 2 (PROMM disease).
Myotonic Dystrophy type 1 (DM1) is a progressive neuromuscular disease affecting all the functions and organs of the body in a very variable way. It is the most common adult form of muscular dystrophy neuromuscular disease. Although no systemic cure exists at this time, symptoms can benefit from significant improvements with treatments. Cardiac and respiratory issues need particular attention, and anesthesia recommendations are now well established. Research is very active, main mechanisms are identified, and systemic drugs are in development – several in clinical trials.
Myotonic Dystrophy type 2 (DM2) is a proximal disease less frequent in the population, though diagnosis is increasing in many areas. DM2 has a spectrum of symptoms and mechanisms close to those of DM1, though usually developing later. The genetic characteristics of DM2 are well known but natural history and treatments are less so, still in their infancy.
The main goal of Euro-DyMA is to federate the activities of nationwide patient associations involved in these 2 diseases, in order to speed up research, the availability of drugs, and improvements in clinical care.