Javier Torras

Javier Torras suffers from Becker Muscular Dystrophy. He was diagnosed when he was 14 years old because his 5 years older brother, with more severe symptoms, was diagnosed. In his case, the symptoms of this disease have been mild and he is lucky to say that, despite starting to have some difficulties, he can still walk fairly well at 54 years old and have an almost normal life. His disease has not impacted much in his life as he has been able to study a university degree, work normally, get married and build a family. He joined ASEM about 18 years ago to receive information about his disease and be up to date on all investigations and possible treatments. He decided to take a more active role in their activities 4 years ago, and becoming a patient representative in the EURO-NMD European Reference Network is a good way to do so.