A close friend of mine was recently diagnosed with Charcot-Marie-Tooth disease (CMT). It’s a disease of the nerves (a neuropathy) that especially affects the distal parts of legs and arms. I’ve had a longtime curiosity about how diseases affect life, and I like to read. Therefore, I bought this book to empathize with his experience more. Here, Johnson describes her lifelong experiences on a particularly difficult life journey with CMT. She does so with the simple goal of helping others who also suffer with CMT.
This book consists of Johnson’s interesting life story and of a couple chapters about research and resources for those with the disease. Her tone is friendly, even folksy, while conveying important knowledge about CMT. She shares how she was bullied as a child, how horse-riding helped her, how she progressed through a college degree, how she raises public awareness of CMT, and how she’s dealt within her marriages. The picture she paints is realistic and not overly rosy. Nonetheless, she conveys hard-won wisdom that others with this rare disease can benefit from.
Johnson had one son, and he, too, tested positive for CMT. She discusses how they dealt with his diagnosis and how they became closer as a result. Unfortunately, because of a different medical condition (i.e., not CMT) unknown at the time, he died suddenly at age 20. She obviously had to deal with grief to this day from that event. This book represents a memorial to him as much as it is a memoir of her story.
CMT is a rare, genetic disease that affects about 300,000 people in the United States. It is progressive – that is, it gets worse with time. There is no known treatment or cure for it, unfortunately. The government and private foundations fund research into it, and certain practices like stretching, massages, and exercises can slow its advance. It is generally not deadly, but often requires braces on the legs, as was the case with Johnson. It is less known by the public than multiple sclerosis or ALS (“Lou Gehrig’s Disease”), but dwells in the same family of diseases. As with most other rare diseases, one of the biggest challenges for patients is finding doctors with more than just a cursory knowledge of CMT.
I’m glad I read this book because it presented a difficult case with an involved story. Understanding Johnson’s journey prepares me to help my friend deal with his journey. I hope he doesn’t experience as much trauma as she did, but this book prepares me just in case. She does an effective job of raising awareness through conveying important information in the setting of her life. Stories of diseases often make a lot more sense in context instead of just in medical/biological jargon. This approachable manner is what makes this writing of her story helpful to others like me.
Living with CMT: A Mother and Son Journey through Charcot Marie Tooth Disease
By Dawn Johnson
Copyright (c) 2020
SuburbanBuzz.com
ISBN13 9781736082003
Page Count: 187
Genre: Memoir, Rare Diseases
www.amazon.com