Breath by Breath

How Charcot-Marie-Tooth Disease Can Impact Breathing

Breath by Breath: How Charcot-Marie-Tooth Disease Can Impact Breathing explores a critical but often overlooked aspect of CMT: its potential effects on breathing. Written for both the CMT community and healthcare providers, this clear and practical guide explains how CMT can affect the muscles used for breathing and outlines what steps can be taken to identify and manage those changes.

Author Kenneth Raymond, a leading voice on breathing and CMT, discusses how muscle weakness may sometimes involve the diaphragm, intercostal, and accessory muscles. These changes can lead to symptoms such as shortness of breath, sleep disturbances, elevated carbon dioxide levels, and more. With accessible language and real-life context, he explains how to recognize possible signs of respiratory involvement and how to move forward with care.

Topics include:

• How breathing works and how CMT might interfere with the process
• Common symptoms and early warning signs of breathing muscle weakness
• Pulmonary function tests (PFTs) and what they can reveal
• The role of neuromuscular pulmonologists in diagnosis and care
• An overview of non-invasive ventilation (NIV), including BiPAP, AVAPS, and iVAPS
• Kenneth’s personal experience with CMT-related breathing changes

Blending plain-language science with personal insight, Breath by Breath empowers readers to take informed action. Whether you are living with CMT or caring for someone who is, this guide offers knowledge, context, and tools to help navigate breathing challenges and improve quality of life.

A portion of the proceeds from this book supports the Charcot-Marie-Tooth Association.