Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families

Overview

Living Well with Mitochondrial Disease helps make sense of mitochondrial disease (Mito), an overwhelming and complex group of diagnoses that has grown exponentially in recent years. The most common of all metabolic disorders, thought to be more common than cystic fibrosis and broader-reaching than most genetic diseases, Mito can affect babies, children, and teens from birth or at any point during their development. Previously healthy adults, as well as adults with a history of unexplained fatigue, are ...

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Overview

Living Well with Mitochondrial Disease helps make sense of mitochondrial disease (Mito), an overwhelming and complex group of diagnoses that has grown exponentially in recent years. The most common of all metabolic disorders, thought to be more common than cystic fibrosis and broader-reaching than most genetic diseases, Mito can affect babies, children, and teens from birth or at any point during their development. Previously healthy adults, as well as adults with a history of unexplained fatigue, are increasingly receiving a Mito diagnosis. Some children with autism spectrum disorders who have medical issues such as digestive difficulties and fatigue are also being identified as having a mitochondrial disorder.

This guide is the first book about Mito written for patients and their families. It helps readers understand how the mitochondria work (they are the powerhouse of the cell, providing energy for the entire body), how people with mitochondrial defects are diagnosed and treated, and how to live well when you, your child, or someone you love is struggling with disabling symptoms.

Topics include:
• The journey to diagnosis
• The biochemistry of Mito
• Practical advice for the specific needs of children and adults
• Understanding and managing symptoms
• Where to find specialists and support
• Treatment approaches
• Autism and Mito

Writing from the perspective of both a parent and nurse, the author shows adult patients, parents, family members, and caregivers how to achieve the best quality of life possible. Readers will feel empowered as they come to understand the causes of Mito, learn to manage the symptoms, avoid emergencies, and make appropriate lifestyle choices.

Cristy Balcells is a nurse, mother of a child with a mitochondrial disease, and tireless advocate for the patient community. She is executive director of MitoAction.org, a Boston-based organization that provides global quality of life initiatives focused on support, education, and advocacy. Cristy has a Master's in Nursing and Community Public Health from the University of Virginia, and has won awards for her innovative maternal-child health program, BabySense. Cristy lives with her husband and three children in Boston.

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Editorial Reviews

ForeWord Digital Reviews
Readers dealing with mitochondrial disease who need tools for answers and action will find them here.
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Product Details

  • ISBN-13: 9781606130148
  • Publisher: Woodbine House
  • Publication date: 2/27/2012
  • Pages: 300
  • Sales rank: 277,227
  • Product dimensions: 7.00 (w) x 9.90 (h) x 0.80 (d)

Table of Contents

Introduction & Chapter Outline vii

Author's Note xv

Acknowledgements xix

Chapter 1 What is Mitochondrial Disease? 1

Chapter 2 The Journey to Diagnosis and Understanding the Causes 13

Chapter 3 Accepting the Diagnosis and Learning to Live WELL with Mito 37

Chapter 4 Approaches to Treatment, Including Vitamins, Supplements, and Therapies 63

Chapter 5 Managing and Preventing Symptoms 79

Chapter 6 Children & Teens with Mitochondrial Disease 115

Chapter 7 Adults with Mitochondrial Disease 147

Chapter 8 Autism and Mitochondrial Disease: Special Challenges and the Diagnosis Debate 161

Chapter 9 Your Mito "Survival Kit" 175

Chapter 10 Mitochondrial Biochemistry 195

Appendix A Glossary 207

Appendix B Physicians and Centers Offering Care and Testing for Patients with Mitochondrial Disease 233

Appendix C Useful Websites for Support and Information 247

Appendix D Sample Individualized Education Program (IEP) 253

Appendix E Recommended Sources for Coenzyme Q10 and Other Mito Cocktail Ingredients 269

Appendix F Selected Bibliography 271

Index 289

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Sort by: Showing 1 Customer Reviews
  • Anonymous

    Posted March 9, 2012

    I am only 3 chapters into reading this book and all I can say is

    I am only 3 chapters into reading this book and all I can say is WOW! This book is EXACTLY what I have been searching for in my journey of learning about mitochondrial disease for my daughter. Some of what is in the book I have had to "piece together" for myself from hundreds of websites, journal articles and talking with other parents...and much of what is in this book is new and enlightening information....ALL IN ONE PLACE! Thank you Cristy for writing such a faboulous "guide book" to this journey they call MITO.

    2 out of 2 people found this review helpful.

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