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Cristy Balcells
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Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families Paperback – February 27, 2012

4.7 4.7 out of 5 stars 81 ratings
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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 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 spectrurm disorders who have medical issues such as digestive difficulties and fatigue are also being identified as having a mitochondrial disorder. This guide – the first book about Mito written for patients and their families -- takes readers from understanding 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, to 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.
Previous page
  1. Print length
    298 pages
  2. Language
    English
  3. Publisher
    Woodbine House
  4. Publication date
    February 27, 2012
  5. Dimensions
    7.5 x 0.75 x 10.25 inches
  6. ISBN-10
    1606130145
  7. ISBN-13
    978-1606130148
  8. See all details
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Editorial Reviews

Review

Cristy Balcells, a registered nurse whose five- year-old daughter, Eva, suffers from a serious and progressive form of the condition, said she wrote Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families to help provide the kind of education and support that was not available when doctors began the long process of diagnosing Eva. She does this effectively, weaving compelling, first-person patient and parent stories into the comprehensive medical information that makes up most of this 350-page book. --ForeWord Digital Reviews, February 2012

About the Author

Cristy Balcells R.N., M.S.N. s a nurse, mother of a child with 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.

Product details

  • Publisher ‏ : ‎ Woodbine House (February 27, 2012)
  • Language ‏ : ‎ English
  • Paperback ‏ : ‎ 298 pages
  • ISBN-10 ‏ : ‎ 1606130145
  • ISBN-13 ‏ : ‎ 978-1606130148
  • Item Weight ‏ : ‎ 1.29 pounds
  • Dimensions ‏ : ‎ 7.5 x 0.75 x 10.25 inches
  • Customer Reviews:
    4.7 4.7 out of 5 stars 81 ratings

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Cristy Balcells

Cristy Balcells

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Customer reviews

4.7 out of 5 stars
4.7 out of 5
81 global ratings

Top reviews from the United States

Tiger Girl
5.0 out of 5 stars extremely valuable resource
Reviewed in the United States on August 12, 2014
Verified Purchase
As an adult with mitochondrial disease, I have to say this book was incredibly useful. Most of the other resources I could find for mitochondrial disease presumed that you were talking about an infant with the condition. I can understand that - a lot of the mitochondrial diseases that show up in infancy are horrifying and lethal, so it makes sense that this is where most of the concern would be - but it isn't very helpful for those of us whose mitochondrial diseases didn't start wrecking our lives until we were into adulthood. My experience is that the diagnosis was a bit of a relief, since at least I now knew what my problem was, it had a name, and it had been wreaking havoc with my life for a long time before I found out what it was. But then I had a really hard time getting more information, because it was all about babies.

As another reviewer mentioned, this book isn't heavy on the science and cutting-edge developments in understanding and treatment. That's why we have google to get us access into the recent literature on medscape and NIH and other research publication sites like that. It's not what this book is for. This book offers enough of the science so that people can actually understand, in general terms, what the basic problem is...and with that information, you have a chance to understand the scientific literature when you start googling your condition.

It also isn't going to tell you what will happen with your mitochondrial disease. It can't. This is a health problem where identical twins with the exact same genetic mutation can have what look like totally different diseases. If my medical specialist can't tell me what to expect, even though he knows exactly what my mutation is, there's no way the author of this book can tell me either.

What this book IS for is exactly what it says: Living Well with the problem. How to deal with the daily stuff that comes up. How to deal with the massive number of supplements and other drugs that might help, but might not. How to deal with it when you get sick with other stuff. How to deal with it when you have to go to the hospital. How to wrap your life around having mitochondrial disease, without making you life be ABOUT mitochondrial disease. How to come to terms with it, instead of having it rule you. There are lots of patient stories, and chapters for babies with mito, adults with mito, and teens who used to be babies with mito who are now having to transition into adulthood.

I wish I could thank the author personally for writing this book.
18 people found this helpful
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Kerry95
5.0 out of 5 stars Long Overdue!!!
Reviewed in the United States on March 14, 2012
Verified Purchase
I cannot adequately express my gratitude to Cristy for carefully and compassionately putting this book together. It is long overdue! I was diagnosed 16 years ago after the birth of my son, and then he was diagnosed with Mito at the age of 13. I have spent countless hours reading and researching anything I could get my hands on and often times it was too remedial or too scientific. Nothing spoke to the human/emotional element of living with this disease, until now.
This book satisfies every aspect of the illness and really touches on so many important points about living with Mito, rather than letting Mito take over your life. The care that Cristy gave to truly addressing patients concerns, right down to the subjects that are tough to address (i.e. interpersonal relationships) is heartfelt. I am a mother, wife, sister, daughter, community member etc., and I could relate on all of these levels when reading this book.
This book will accompany my son and I on all of our travels to appointments with specialists, or to his future college of choice to offer information when needed, and more importantly to guide us when we feel lost.
Thank you Cristy for giving us a voice. Thank you for writing such an important book. This will help so many families either new to the diagnosis or the "seasoned patient." Thank you!!!!!!
14 people found this helpful
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Julie G
5.0 out of 5 stars A Wealth of Information
Reviewed in the United States on November 9, 2012
Verified Purchase
A great book written in easy to read format that has the potential to help anyone affected by Mitochondrial Disease to begin to understand through the complexities of this chronic illness. Whether the reader is an adult patient, a parent, a caregiver, an educator, or a member of the medical community this book has a lot to offer in ideas in how to try to relate to those affected by Mito. The Mito patient faces many daily struggles. Cristy shares what she has learned through her own experiences with her daughter who has a Mito diagnosis. Cristy also shares from experiences from which she listened to others speak of their own situations. Cristy shares with readers how body systems are effected by Mito and gives tips as to how symptoms might be minimized through careful planning. Cristy offers information on common supplements recommended by specialists as well as what one might expect for diagnostic testing. My favorite quote by Cristy is when she mentions "Knowledge is empowering". Her book "Living Well with Mitochondrial Disease" gives the reader a wealth of knowledge.
One person found this helpful
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Lisa
5.0 out of 5 stars A MUST for Mito!
Reviewed in the United States on January 31, 2014
Verified Purchase
This book is a "must have" for people suffering with a mitochondrial disorder, their family members and their healthcare providers. I bought a copy for each of my doctors, each family member, and keep one with me at all times. When I've had to be hospitalized, this is the single best book to bring along! Excellent resource for your anesthesiologist, nurse, physician or pharmacist, Cristy Balcells has given us a voice - backed by her own experiences as a parent (her child has a mito disorder) and a healthcare professional. The information and format make it easy to use. A great gift for a teacher, too! I donated one to our local Health District office to keep on hand as a resource. For a very complicated illness, Cristy has managed to keep it short, simple and jam-packed with vital information and advice.
2 people found this helpful
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BFS
5.0 out of 5 stars A must read for anyone suspected or diagnosed with Mitochondrial Disease
Reviewed in the United States on March 20, 2012
Verified Purchase
This book was wonderfully written, especially for a family whose child is suspected of mitochondrial disease (including those who have or are suspected to have an AUTISM diagnosis) and they are in that frantic state of trying to learn everything about the disorder their child is being tested for, learn all about the testing options, and just trying to bring themselves up to speed so they can have an intelligent conversation and ask meaningful questions to the medical professionals they are interacting with for care of their child. The author does a great job of simplifying a very complex disorder into terms that anyone can understand... For more information, there is a longer review of this book on my blog: babyfoodsteps dot com
3 people found this helpful
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Top reviews from other countries

gordon wallace
3.0 out of 5 stars good but it covered mainly children
Reviewed in the United Kingdom on July 22, 2013
Verified Purchase
good book but covered mainly children some of it was over my head.
i gave it three stars because it was to confusing,nurse and my sister read the
book also and she spent forty ,years as a staff nurse and agreed with me.
One person found this helpful
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