Giving back independence
"Before, you survived. Today, you live." As this mother testifies, the quality of daily life of families affected by a neuromuscular disease has significantly progressed. AFM-Téléthon and the Telethon have made a major contribution. Indeed, since its creation the association has worked to improve patient quality of life. Its guideline: to give them the means of taking control of their life and gaining independence in spite of the disease which is gradually paralysing all their muscles. For example, it also devised an innovative habitat-service formula, which allows highly dependent adults to live at home independently and in total safety.
Compensating for the disability
For example, in 1973 it imported the first electric wheelchairs. At that time, only manual wheelchairs were available in France and these are totally inappropriate for someone with no strength in their arms. Since then, AFM-Téléthon has contributed to importing and developing many innovative technical aids to compensate for the disability, like for example the wHing wheelchair, an affordable, very handy and innovative device.
Similarly, for a long time families had to face the consequences of the disease alone: trailing from one consultation to the next without finding a physician who was competent in neuromuscular diseases, carrying out incessant administrative procedures and fighting to get their child into school. After the first Telethon, thanks to public generosity, AFM-Téléthon created a new support profession to help them: the facilitator. This mediator points families towards the right contacts, helps them obtain their social rights and finds technical or human aids to compensate for the disability. These helpers do not carry out the procedures in place of the families. On the contrary, this vocation is to help patients gain their independence.