Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that causes a loss of motor neurones and muscle, often causing premature death in patients. Being diagnosed, or being a parent of a child diagnosed with SMA can be daunting. Here’s a list of helpful and informative books for patients, parents and caregivers alike.
1. “Courage is Compulsory” by Tori Elliott, Sam Mildon and Laura Gould
This book shares the stories of real SMA patients. It’s an inspiring read for young people facing similar challenges and a source of comfort for family members of someone facing a short lifespan.
2. “Spinal Muscular Atrophy – Disease Mechanisms and Therapy” by Sumner, Paushkin & Ko
This comprehensive reference covers recent advances in SMA research as well as an overview of disease mechanisms, pathology, standards of care, and therapeutic development. Written by experts on the disease, this book is a recommended read for both patients and caregivers who want to come to grips with the mechanisms of the disorder.