Download Ebook Living Well With Mitochondrial Disease: A Handbook for Patients, Parents, and Families, by Cristy Balcells

Download Ebook Living Well With Mitochondrial Disease: A Handbook for Patients, Parents, and Families, by Cristy Balcells

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Living Well With Mitochondrial Disease: A Handbook for Patients, Parents, and Families, by Cristy Balcells

Download Ebook Living Well With Mitochondrial Disease: A Handbook for Patients, Parents, and Families, by Cristy Balcells

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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

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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.

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Product details

Paperback: 300 pages

Publisher: Woodbine House (February 27, 2012)

Language: English

ISBN-10: 1606130145

ISBN-13: 978-1606130148

Product Dimensions:

7 x 0.7 x 9.9 inches

Shipping Weight: 1.2 pounds (View shipping rates and policies)

Average Customer Review:

4.9 out of 5 stars

48 customer reviews

Amazon Best Sellers Rank:

#220,775 in Books (See Top 100 in Books)

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.

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!!!!!!

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.

VERY, very important and informative, especially for adults with this illness, because most articles about this disease is geared to children. Helpful sections and tips.

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.

Best and I believe only book on mitochondrial disorder. The author is a RN and her daughter has the disease! It's a wife range of ages and people who are being diagnosed these days and many of them are different in a way or two. We know my daughter had some type of it but it was never fully diagnosed and she passed away before they could diagnose it completely!

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