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Living Well With Mitochondrial Disease

Cristy Balcells pens a must-have book for Mito families

 

How to order "Living Well with Mitochondrial Disease"

Click on Woodbine House, Amazon.com or Barnes & Noble to order online or call 800-843-7323.

In Canada: Monarch Books 5000 Dufferin Street, Downsview, Ontario M3H 5T5
Toll-free: 800-404-7404; phone: 416-663-8231; Fax: 416-736-1702

In Europe: Gazelle Book Services White Cross Mills, High Town, South Road, Lancaster LA1 4XS UNITED KINGDOM Phone: (1) 524-68765 Fax:(1) 524-63232

It's been called a compassionate and rich handbook, an invaluable tool, and a long overdue body of work. Cristy Balcells' book, "Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families," is a must-have resource for everyone on the mitochondrial disease journey. Cristy, a nurse, mother of a child with Mito, and family advocate and leader of MitoAction, brings all those roles into play in writing this book.

"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," said Jessica Fein, mom of a 6-year-old daughter with Mito. "Balcells' unique perspective as both a Mito parent and a 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 daughter's illness and feel better equipped to serve as her advocate."

Cristy was also looking for answers and support when her daughter, Eva, was in the process of being diagnosed, but there were none to be found. That is part of the reason Cristy wrote this book, the first one about Mito written for patients, parents, families, and caregivers.

Estimates suggest that one in 2,000 people will face a diagnosis of mitochondrial disease. Mito is a chronic, progressive disorder that occurs when the mitochondria of the cell cannot produce enough energy for cell or organ function. The severity of Mito symptoms differs from person to person and symptoms can first appear in infants, children, teens, or adults. But most people don't know much, if anything, about Mito. Even in the medical community, this disease is little known.

"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," said Dr. Katherine Sims, Associate Professor of Neurology, Harvard Medical School, and Director of the Massachusetts General Hospital Mitochondrial Disorders Clinic. "Cristy Balcells has written a compassionate and rich handbook as a companion for those on this journey."

Cristy sat down for a Q&A to discuss her book.

Q&A with author Cristy Balcells

 

Why did you write "Living Well with Mitochondrial Disease: A Handbook for Patients, Parents and Families"?

I felt like I was in a very unique position as a mom to a little girl with mitochondrial disease, as a nurse who could understand the medical aspect, and as a leader of MitoAction and an advocate for families. I felt like it was my calling because I was in this where I could understand all sides - from medically deciphering the diagnosis and symptoms to knowing what it feels like to be terrified and tired as a mom. There also was not a book written just for patients and families with mitochondrial disease, and I felt very strongly that there should be!

As a mom, when my daughter was first diagnosed, the first thing I did was go looking for a book. I didn't find one! There is abundant information online, but a book is like a roadmap. It gives you direction, advises you of roadblocks, and helps you plan. Just as importantly, the information within a book is consolidated and should be reputable and based on evidence.

From my clinical experience as a nurse, I understood the importance of a resource like this that could help clinicians and families. And as a leader and advocate, I recognized that people were asking the same questions over and over again. I've been very passionate about building MitoAction, building a Mito community, and building a website that's free, comprehensive, useful, and accessible. But there's something to be said about having a book in your hands to get started on this journey. You can also go back to it when you need help.

I've been thinking about writing a book for years. It was something I needed to do personally. I feel like I owed it to my daughter and every patient and family living with Mito to write this book.

Is there any other book like this out there?

There are many wonderful resources that exist today, many of which didn't exist five years ago. There had only been medical textbooks. I wanted there to be a book for everyone to understand, that wasn't a memoir, that wasn't a textbook, but a guide for the average patient or family.

However, because there wasn't any other layperson's Mito book, I had the hard and important job of selling the idea to publishers who had never heard of mitochondrial disease! I started using the phrase in convincing them that "Mito is the next autism" - meaning that there is a boom of patients waiting to explode. Ten years ago there wasn't much written about autism. Ten years from now, everybody will be talking about Mito. This book is an important step in raising awareness!

Mitochondrial disease is such a complex disorder. How were you able to make the book easy to understand for someone without a medical or science background?

That was probably one of the most difficult parts about writing this book (well, that and the chronic lack of sleep!). The biochemistry of mitochondrial disease is SO complex. For me to a) understand the biochemistry of Mito, b) translate that into plain English, and c) put it into context was extremely challenging. I was fortunate to have a lot of help from Dr. Kathie Sims at Mass General and Nancy Slate, her research coordinator, along the way.

I also love analogies. I think analogies help paint a picture for the reader of what's really happening in our cells. For example, I describe coenzyme q10 as a "taxi" that carries electrons between the complexes in the electron transport chain. It was important to me to describe the biochemistry of what mitochondria do and what happens in mitochondrial disorders without dumbing it down.

The title says "for Patients, Parents and Families." Would you recommend that doctors read this book, too?

I would definitely recommend that doctors, nurses, therapist, teachers, etc. read the book. I felt like I needed to address all audiences. In fact, sometimes a simple explanation can be a great starting point for a conversation between a patient and a doctor. The compilation of resources, the approaches to diagnosis, the description of symptoms, and the approaches to treatment and coping would be great information for anyone involved with a person who has Mito!

As I was writing this book, I often had in my mind who I was talking to - just like I was talking to you as your nurse or as a friend. I thought about the adult patient struggling to get others to understand, the parents of a baby with failure to thrive, the teens struggling with their failing bodies, and the family members trying to understand the diagnosis and make important care decisions.

What's the main message you want to convey with the book?

LIVE. Every day you spend fighting, upset, angry, or negative is one less day that could have been great. Mitochondrial disease is a diagnosis, not a definition of what you can do. You'll find undertones of my personal approach to living with Mito, which is that recognition that this is a part of your life but not necessarily the enemy. If I didn't know what it felt like to be terrified that your child was going to die, to be exhausted from countless sleepless nights, to struggle through a bunch of medical appointments without getting any answers, etc., I don't think I could give the kind of advice that I weave throughout the book. I believe in acceptance, empathy, and forgiveness. I also tried to lay right out on the table some of the aspects of the disease that are really personal, such as redefining your expectations or dealing with friends and family who let you down. I talk about a mom's battle to get her school system to understand her child with the "invisible" disease. I talk about a dad who is the breadwinner for multiple affected family members and how his career falls apart because his energy was used instead in caring for his family.

As the full-time Executive Director of MitoAction and a mom of three, including a daughter with Mito, when did you find the time to write this book ?

I look back at the last two years and ask myself the same thing! I made a commitment that it would not take away from my family or my job as Executive Director at MitoAction. I'm often up in the middle of the night with Eva. I spent a lot of pockets of time in the middle of the night working on the book. I also spent several weekends just holed up working on it. My husband and children were amazingly supportive and patient with me! There were many times when I was so exhausted I got discouraged, but I just kept my focus on my daughter and on the many patients and families who need help. I am a firm believer in patient empowerment and in collaboration, and I wanted to offer the information and the resources to the patients and families so that we can grow as a community!

What is the scariest thing about a Mito diagnosis?

In the author's note in the beginning of the book I talk very personally about what we went through when getting a diagnosis for my daughter. I think for many of us who live with Mito, it's the uncertainty about the future. You hear and read a lot of conflicting information and you don't know what to believe. You may be afraid to have hope. My daughter is proof that you can't predict the future. We thought she'd only have a few years to live and she'll be 8 years old next month. I feel blessed to see her grow and thrive but not a single day goes by that I don't recognize that the opposite could be true. The uncertainty is really difficult.

When a person tells you her child has just been diagnosed with Mito, what is the first thing you would tell her?

I would say to pace yourself. This is a journey, not a race.

About the author

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.

Praise for "Living Well with Mitochondrial Disease"

"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 the 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

"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 the medical community, schools, and resource people."

-- Jean Shepherd, retired Deaf Educator

"Parents of children with mitochondrial disease face a two-fold challenge- supporting their families and navigating a complex medical care system. What better person to 'Sherpa' parents through this process than a mother of a child with mitochondrial disease, a nurse, and a foundation leader. Cristy is all three. As a CEO of a pharmaceutical company developing drugs for mitochondrial disease, I have experienced firsthand the challenges families and care providers face in creating a unified standard of care, and family and physician resources. This is a long overdue body of work that needs to become a living document to guide care, and serve as a benchmark for best practices."

-- Guy Miller, MD, CEO & Founder of Edison Pharma

How to order "Living Well with Mitochondrial Disease"

Click on Woodbine House to order online or call them at 800-843-7323.

Check out Amazon.com.

Go to Barnes & Noble.

In Canada:

Monarch Books 5000 Dufferin Street, Downsview, Ontario M3H 5T5

Toll-free: 800-404-7404; phone: 416-663-8231; Fax: 416-736-1702

In Europe:

Gazelle Book Services White Cross Mills, High Town, South Road, Lancaster LA1 4XS UNITED KINGDOM

Phone: (1) 524-68765 Fax:(1) 524-63232