"As a long-time adult patient, and parent of a son also diagnosed, I am so happy to have this supportive resource. It is an important contribution to the awareness of the complexities of living with and managing a disease that is little known, even in medical circles. This invaluable compendium of information will be helpful not only to families, patients, and caregivers, but also to the medical community, schools and resource people."
-Jean Shepherd, retired Deaf Education
"Readers dealing with mitochondrial disease who need tools for answers and action will find them here."
-ForeWord Digital Reviews
"There is an overwhelming need for educational support materials that can help guide a patient or their family through the challenges of managing the daily ups and down of these metabolic disorders. Cristy Balcells has written a compassionate and rich handbook as a companion for those on this journey."
-Dr. Katherine Sims
Associate Professor of Neurology, Harvard Medical School and Director of the Massachusetts General Hospital (MGH) Mitochondrial Disorders Clinic
"Living Well with Mitochondrial Disease: A Handbook for Patients, Parents and Families is the first book of its kind. Cristy Balcells, a nurse and mother, wrote the book she wanted to find when her own daughter was diagnosed with a mitochondrial disease. Her task was a challenging one. This is a discouraging diagnosis. There are currently no cures for mitochondrial disease, and evidence-based treatments are hard to find. Each patient is so different that finding a treatment plan is a long arduous process with mixed results.
Balcells uses her medical knowledge to explain the complex details of mitochondrial disease and available treatments in language manageable for readers without a medical background. Balcells also provides some comforting support and practical tips for coping with the ups and downs of mitochondrial disease. Parents of 'Mito-kids' will find sections about working with schools informative. Her supportive confident tone offers much hope for a fuller life with Mito.
The book addresses the disease across the lifespan with a clear format. Readers will find it easy to locate information specific to their needs. Many additional resources are included, but the content is not comprehensive. In fact, readers need to be cautious when using this book for several reasons. Some controversial treatments haven't been proven effective, and aren't for everyone. Diet therapies and supplement combinations – the Mito Cocktail – may be very helpful for some patients, but have questionable results for others. Because it is written by the executive director of MitoAction, a support, education and advocacy organization, there may be some concern for bias. Critically important to the reliability of this book as a resource is the currency of the information it provides. Without frequent, careful updating and revision, the content will quickly become obsolete.
This compassionate, thoughtful and information-rich guide book will be an anchor for many patient families as they navigate the rough waters of a complicated and maddening disease about which far too little is known. However, it doesn't stand alone as a comprehensive resource. Care must be taken to balance the information here with more evidence-based strategies, and advice from current experts in the study of mitochondrial diseases."
-CAPHIS Consumer Connections
"When our family received a diagnosis of MELAS, we were sent on a complex and uncharted course. Cristy's guidance, wisdom, and insight kept us on track. Her book is invaluable to families and patients when they must educate medical professionals about Mito and advocate for accommodations necessary to manage the disease. The wisdom and real-life success stories laid out in this book help anyone touched by Mito from feeling alone. We realized early on that it is all about living well with Mito, and we have with Cristy's help and the information she includes in this comprehensive and vital resource."
-Gordon Russell, husband of a patient with mitochondrial disease
"This is the book I wish I had been given when my daughter was diagnosed with mitochondrial disease and the resource I've been looking for ever since. Balcells' unique perspective as both a Mito parent and medical practitioner results in advice that is personal and practical, compassionate and comprehensive, accessible and expert. After reading the book I understand so much more about my daugther's illness and feel better equipped to serve as her advocate. Balcells defines the ideal 'Mito Survival Kit'; the only thing she left out was this book!"
-Jessica Fein, mother of a six-year-old daughter with mitochondrial disease
"Mitochondrial diseases cover a wide range of biological disorders, and may be more common than one would think. Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families is a discussion of the disorder, what the symptoms may be, understanding when to seek a diagnosis, the genetics, how to deal with the symptoms and the pursuit of treatments. Mitochondrial disease may be present instead of the misdiagnoses of cerebral palsy, autism, chronic fatigue syndrome among others. For those seeing a second opinion, Living Well with Mitochondrial Disease is a strong addition to any health reference collection."