Ever since the words “possible mitochondrial disease” were uttered from the neurologists mouth in September 2010, I have searched for a book like this one. But until this month (March 2012), none existed. Thanks to Cristy Balcells, executive director of Mitoaction.org, nurse, and mom to a daughter with mito, this “travelers guide” to this journey called “mitochondrial disease” is now available for parents, caregivers, patients, doctors and therapists alike: Living Well With Mitochondrial Disease
There is not a stone that Cristy does not overturn in this book…she covers it all! From the diagnostic path (which we are still on) to hydration and nutrition, from the complex biochemistry of the disorder (made simple) to how to organize the vast amounts of medical records and make a medical binder. She discusses all the ages and stages of mito from newborns to adults and covers the complex genetics explaining how different members of a family can have the same mutation, yet present with very different symptoms. She has done a superb job of using easy to understand analogies to explain the complex workings of our bodies on a cellular level. She describes heteroplasmy using apples and dysfunctional mitochondrial using appliances in a home! Balcells has an amazing way of injecting HOPE into her writing and advice, something that is crucial to a parent who is walking this very uncertain and winding journey. She advises not believing in the “crystal ball” and reminds the reader that in the infancy of a disorder (which Mito is in its infancy, having being only described in the 70’s and for which insurance codes only existed in the 1990’s!) one must remember that there is A LOT we still do not know about this disorder and that the medical literature often reflects only those most seriously affected, and that “No one- not even the best doctors in the world- can predict OUR future.”
A few of the parts of the book that I found most helpful, enlightening, or relevant were:
- Analogy of Mitochondrial disease and appliances in a house on pg.2
- Other causes of Mitochondrial disease (when mito is secondary to something else) p. 32
- Reacting to diagnosis p. 38
- Choose your friend wisely p.53
- Choose the right Care Manager Pros and Cons p.54
- Hydration info including Holliday-Segar Method charts p. 84-87
- Medications and Toxins p.112 (including aspirin, making me continue to wonder if aspirin like chemicals, salicylates , in food could be an issue for mito patients)
- “What Does Fatigue in Children Look Like?”p. 143 (giving me pause, to realize the tantrums that we have seen and correlated to our daughter’s increased activity levels are NOT a figment of my imagination!)
- Autism and Mitochondrial Disease: Special Challenges and the Diagnosis Debate chapter 8- A MUST READ for ANY and ALL parents of a child who has an Autism, PDD- NOS, or an Asperger’s diagnosis…or any parent who has a child with behavioral issues whose pediatrician may have implied, “Maybe it is Autism? Let’s wait and see, they are too young to know for sure.” The list on p.164-165 includes the Markers of Mitochondrial Disease in Children with Autism as a Primary Diagnosis… that (in my opinion) should be a STANDARD OF CARE checklist, which should be completed prior to any psychological diagnosis of Autism, being made. Page 169 includes a list of recommendations for preventative measures for vaccines, so that a child with mito/autism is not over-taxed energy wise.
- And last, but definitely not least, My favorite quote from the book is this one:
“Dare to ask yourself: What will mitochondrial disease give me? It will give you incredible strength. It will teach you to fight for yourself (your child). It will teach you to step back and think critically. It will teach you that some people are not worth your energy, and it will teach you to get comfortable with yourself. You will learn to read your own (your child’s) body , and to trust yourself and your instincts. You will learn to find value in people and things that others overlook. You will learn to say “no” and to say “thank you”. You will become your (your child’s) own best advocate. It is my hope that one day you will be able to say that you learned more about yourself (your child) by having mitochondrial disease than if you had not.”
It is evident from the first pages of the book with the Author’s note (a compelling account of a mother’s journey to understand what is happening to her daughter developmentally, all while knowing in her heart that something was just not quite right and advocating tirelessly to find answers for her daughter) to the very end, a thorough appendix that includes everything from sample IEP for mito kids, to and extensive glossary and listing of mito specialist doctors across the USA, that this is a very PERSONAL & PASSIONATE journey for Cristy Balcells. I can’t thank her enough for sharing her amazing insight about this journey with others, so that parents, like us, could feel a little less “alone”.
For more on Cristy Balcell’s book and an interview with her please see this PAGE at Mitoaction.org.