Even very young children can learn to accept respiratory care as part of life.

Respiratory health is a vital issue for children and adults who have neuromuscular diseases. These diseases progressively weaken muscles, sometimes including those you use in breathing and coughing. Weak respiratory muscles may eventually lead to respiratory failure, a frequent cause of death in many neuromuscular disorders.

Fortunately, today, expert physicians such as those at MDA clinics know a great deal about treating the respiratory effects of neuromuscular diseases. This booklet will help you understand how to manage your respiratory health and intervene before it reaches a crisis level, under the direction of your health care team.

This publication is an outgrowth of MDA’s “Breathe Easy: Respiratory Care for Children With Muscular Dystrophy.” We’re indebted to the authors of that booklet: Robert Warren, M.D.; Vikki Stefans, M.D.; and Sheila Horan, registered respiratory therapist, all at Arkansas Children’s Hospital, where their work with children at MDA’s clinic inspired this booklet. It proved so helpful to families of children served by MDA that we decided to expand it to cover both children and adults with neuromuscular diseases.

For special help with this edition, we’re grateful to two expert physicians. Jonathan Finder, M.D., is a pediatric pulmonologist at Children’s Hospital of Pittsburgh, where he’s a consultant to the MDA clinic, and an associate professor at the University of Pittsburgh School of Medicine. Joshua Benditt, M.D., is director of Respiratory Care Services at the University of Washington Medical Center in Seattle, and sees patients at the university’s MDA/ALS center and MDA clinics. He’s a professor of Medicine at the University of Washington.

Our thanks also go to J.H. Emerson Co. of Cambridge, Mass., manufacturer of the CoughAssist, for underwriting the costs of production of this booklet.

The contents of this booklet will raise many topics and questions that you can discuss with your MDA clinic doctor.  MDA’s clinics serve Americans with more than 40 neuromuscular diseases. Click here for more respiratory care resources.