WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Friday, April 20, 2012

Mitochondrial Disease -HandBook

I think most Mom's tease that their kids don't come with a handbook or a book on How To's.

Cristy Balcells has written the first Mito Handbook. Whether you have been dealing with Mito for years, or are mild, or are severe or just got your diagnosis yesterday- this book covers it all.

True insights into this journey, not just from her families journey, but from her experiences helping so many other families with their own unique journey's with this disease.

I found this news clip this morning, and kind of kicked myself for not posting information on how to buy her book sooner!

Where to Buy the Book- at MitoAction

Here is the first page cut and copied from the News article,

Hingham mom pens handbook to help others
Shares knowledge about mitochondrial disease

Wicked Local Photo by Robin Chan
Eva Balcells, 8, pictured here with her mother, Cristy, holds her mother’s book Living Well with Mitochondrial Disease, which is a handbook for patients and their families who are living with the disease.

By Liz Fuller
Wicked Local Hingham
Posted Apr 12, 2012 @ 06:50 AM
Hingham —
When Hingham resident Cristy Balcells’s two-year-old daughter Eva was diagnosed with mitochondrial disease six years ago, she hadn’t heard of the condition, despite being a registered nurse. But as the years progressed, she soon found herself as an expert on the disease, helping thousands of other families around the world understand and live with this chronic, genetic disorder.

While mitochondrial disease presents itself in many different ways per individual, Eva’s began as a baby and was only recognized as she missed important growth milestones. “She was a very sleepy baby,” Balcells commented. “We were happy about that, since she was the third child and as parents, that was nice.” But when she and her husband noticed that Eva was not growing properly, they knew something was wrong.

Mitochondrial disease is a chronic, genetic disorder that occurs when the mitochondria of the cell fails to produce enough energy for cell or organ function. It can present itself with many different symptoms such as poor growth, loss of muscle coordination, muscle weakness, neurological problems, seizures, autism, autistic spectrum, autistic-like features, visual and/or hearing problems, developmental delays, learning disabilities, heart, liver or kidney disease, gastrointestinal disorders, severe constipation, diabetes, increased risk of infection, thyroid and/or adrenal dysfunction , autonomic dysfunction , and neuropsychological changes characterized by confusion, disorientation and memory loss.

Barcells said that mitochondrial disease isn’t necessarily one that presents itself at birth. “People can develop the disease at any age. Adults can suddenly feel very tired and foggy, have trouble with their memory. They could have muscle aches as well. And it can all be attributed to aging, so it is very difficult to diagnose.”

As Barcells tried to understand the condition, she found that resources were limited. “There were no books that were for the patient and their families. Nothing existed,” she said. “It was frustrating.” So Barcells decided to write a book that would help those who had the disease and their families. “A person wants questions answered in a language they can understand. I had to write this book. I felt I owed it to my daughter and to everyone who is struggling to make sense of it all.”

The book, Living Well with Mitochondrial Disease, is “like a roadmap” to help direct people. As a nurse, mother, and the executive director of MitoAction, Barcells believed that she was meant to write this “handbook”. “It was the perfect triangle. I have a bird’s-eye-view of things, which is unique,” she said.

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LINK for full Article.


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