Table of Contents
Table of Contents
Part I. Understanding the Science and Genetics of Fatty Acid Oxidation Disorders
Chapter 1. Metabolic and Fatty Acid Oxidation Disorders (FAODs)
Chapter 2. Genetics of Fatty Acid Oxidation Disorders
Chapter 3. Sudden Infant Death Syndrome (SIDS) or “Crib Death” and the Newborn Screen (NBS)
Chapter 4. FAODs in General
Chapter 5. Disorders of Transport/Carnitine Cycle Defects
Chapter 6. Beta Oxidation (â-Oxidation) Disorders
Chapter 7. Disorders of Mitochondrial Respiratory Chain Electron Transfer and Unspecified FAODs
Part II. AN FAOD in the Family
Chapter 8. Congratulations … Oh, Wait!
Chapter 9. The Elephant in the Room
Chapter 10. The Diagnosis
Chapter 11. What Now?
Chapter 12. Finding the New Normal
Chapter 13. Educating Others
Chapter 14. Help from the Trenches
Chapter 15. Facing Family-Planning
Chapter 16. As if Things Weren’t Complicated Enough!
Chapter 17. Having a Life
Chapter 18. Hope for the Future
Part III. Resources and References
Chapter 19. General Resources and References
About the Authors
“Rosemary Forrest and Nicole Baugh have used both their professional and personal experiences to write a wonderful and lay-friendly book for families living with a Fatty acid Oxidation Disorder (FOD), as well as for medical professionals that may not be familiar with these rare metabolic disorders. They give ‘direction and hope’ and understanding to families that are new to their diagnosis and treatment which helps to calm many of the fears that accompany a genetic diagnosis, especially for a newborn. Their writing and organization of the book flows in a way that decreases the complexity of technical medical terms, processes, and research and helps families understand that having an FOD is NOT a death sentence. Yet, they also share how living with these disorders can impact not only the affected child or adult, but the entire family system at home, at school/work and when hospitalized. Every chapter provides valuable information for families and professionals as they begin their journey through diagnosis, treatment, and living their lives with an FOD. Their Resource section provides informational links so families do not feel so alone and gives ways to connect with online and/or face-to-face emotional and practical Support resources, as well as links to find more medical information or possible medical support and clinical trials for new drugs. This book will give families a way to ‘wrap their heads around’ FODs without totally overwhelming them. I highly recommend this book to all affected individuals and families with FOD and for new and seasoned medical professionals.” – <strong>Deb Lee Gould, MEd, Founder/Director of the FOD (Fatty Oxidation Disorders) Family Support Group</strong>
Briefly, this will be most useful to primary level medical caregivers: doctors, nurses, emergency room personnel, neo-natal personnel, nutritionists, anyone with a patient who has one of these disorders or who might in the future have such a patient. It was written for the educated and/or highly motivated layperson who is either dealing with one of these disorders, or who has a family member who is.
Geneticists are NOT a good target audience as it was written for the layperson and purposely avoids the intricacies on which geneticists focus. They will find it elementary but may be willing to recommend it to families or primary-level physicians.