up and down - living with a rare muscle disease

Up and down, yes, that describes the author's feelings very well. She searched for a fitting title for a long time. Hardly anyone knows what it feels like to live with centronuclear myopathy, as this disease is very rare. The name of the disease is already a tongue twister, so we will shorten it to CNM. But if that were all! Why is Gabriela Hofer writing about this? A good question, as it has been anything but easy for her to reveal her innermost thoughts and share with the reader things that some would prefer to keep to themselves. Anyone who has read this book now knows what she feels and thinks. The motivation for writing this book is to show the reader that people suffering from a rare, not visibly apparent illness are not pretending; rather, there is something very serious going on.