| 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 of all 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 spectrum disorders who have medical issues such as digestive difficulties and fatigue are also being identified as having a mitochondrial disorder.
This guide is the first book about mitochondrial disorder written for patients and their families. It helps readers understand 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, and how to live well when you, your child, or someone you love is struggling with disabling symptoms.
· 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.
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 degree in nursing and community public health from the University of Virginia, and has won awards for her innovative maternal-child health program, BabySense.
Keywords: Special needs; Mito; mitochondrial disease