Patient narratives

Like most other people, people and families living with a neuromuscular disorder feel a need to share their life experience.

One way of doing this is by their life stories: about the good things and the bad; about getting a diagnosis; about friends and family; love and love life; and about death. In short, all the things that other people deal with everyday as well.

Journalistic storytelling is a method with which a journalist can portray a person and his life on the basis of interviews, observation and interpretation.

The stories are not only relevant to other people living with a neuromuscular disorder. Health care providers have an opportunity to get first-hand information about living with a neuromuscular disorder that they would not get during an ordinary visit. And people in general will discover that a person living with a neuromuscular disorder is not just a diagnosis but first of all a fellow human being.

Being ill and oneself: Six stories about living with Amyotrophic Lateral Sclerosis

Adult life with SMA2: Three people behind a diagnosis