Sign-In
Cart
The Barth Syndrome Sourcebook: A Comprehensive Guide for Patients and Families
Paperback
Please select the version of book you would like to purchase.
ISBN13: 9798300428730
Publisher: Independently Published
Published: Nov 18 2024
Pages: 126
Weight: 0.39
Height: 0.27 Width: 6.00 Depth: 9.00
Language: English
Publisher: Independently Published
Published: Nov 18 2024
Pages: 126
Weight: 0.39
Height: 0.27 Width: 6.00 Depth: 9.00
Language: English
Barth Syndrome (BTHS) is a rare and complex genetic disorder that challenges those it touches, yet it is also a story of resilience, innovation, and hope. The Barth Syndrome Sourcebook is an essential resource for patients, families, and caregivers navigating life with this condition.
This comprehensive guide demystifies the medical aspects of BTHS, covering everything from diagnosis and treatment to emerging therapies like gene therapy and Elamipretide. It also delves into the personal side of the journey, sharing inspiring patient stories of perseverance and triumph.
This comprehensive guide demystifies the medical aspects of BTHS, covering everything from diagnosis and treatment to emerging therapies like gene therapy and Elamipretide. It also delves into the personal side of the journey, sharing inspiring patient stories of perseverance and triumph.
Inside, you'll find:
- Clear explanations of symptoms, including cardiomyopathy, neutropenia, and muscle weakness.
- Practical strategies for managing daily life, from school and social activities to emotional well-being.
- Resources for genetic counseling, support groups, and mental health services.
- Updates on cutting-edge research and potential cures on the horizon.
- Real-life accounts from families who have transformed challenges into strength.
Also from
Whitehouse Mat, Steph
The Babesiosis Patient's Sourcebook: A Comprehensive Guide for Patients and Families
Whitehouse Mat, Steph
Paperback
$23.92
The Bartonellosis Patient's Sourcebook: Your Guide to Cat Scratch Disease, Trench Fever and Beyond
Whitehouse Mat, Steph
Paperback
$23.92
Also in
Genetic Conditions
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS
Muldowney Pt, Kevin
Muldowney Pt, Kathleen
Hardcover
$69.94
When a Parent Has Cancer: A Guide to Caring for Your Children [With Companion Book "Becky and the Worry Cup"]
Harpham, Wendy S.
Paperback
$17.99
A Bump in the Road: My Medical Journey over Potholes, Detours and the Bridge to Gratitude
Caprio, Michael
Paperback
$18.99
The Disease Delusion: Conquering the Causes of Chronic Illness for a Healthier, Longer, and Happier Life
Bland, Jeffrey S.
Paperback
$18.99
How to Do Life with a Chronic Illness: Reclaim Your Identity, Create Independence, and Find Your Way Forward
Stacey, Pippa
Paperback
$27.93
Down Syndrome and Dementia: A Guide for Family Members, Social and Health Care Staff and Students
Dawson, Bob
Paperback
$16.24
The Longevity Nutrient: The Unexpected Fat That Holds the Key to Healthy Aging
Venn-Watson, Stephanie
Paperback
$19.00
The DNA Way: Unlock the Secrets of Your Genes to Reverse Disease, Slow Aging, and Achieve Optimal Wellness
Khan, Kashif
Paperback
$17.09
The Genome Odyssey: Medical Mysteries and the Incredible Quest to Solve Them
Ashley, Euan Angus
Paperback
$18.99
Mthfr Gene Chaos: Understanding the Hidden Effects on Fatigue, Anxiety, and Hormones
Gillard, Kenneth
Paperback
$28.79
The Ehlers-Danlos Syndrome Manual: A practical approach to managing joint pain, fear of movement, fatigue, and other symptoms.
Carrington, Lila
Paperback
$18.50
Dressmaker's Mirror: Sudden Death, Genetics, and a Jewish Family's Secret
Liebman, Susan Weiss
Hardcover
$44.80
Your Genius Body: A Guide for Optimizing Your Genes & Changing Your Life
Rostenberg, Andrew
Paperback
$20.89
MTHFR Diet: A Beginner's 2-Week Step-by-Step Guide to Managing MTHFR With Food, Includes Sample Recipes and a Meal Plan
Winzant, Jeffrey
Paperback
$12.58
Everything you need to know about Kidney Failure: Causes, Symptoms, Treatment
Health, Bizmove
Paperback
$11.96
Manufacturing My Miracle: One Woman's Quest to Create Her Personalized Gene Therapy
Viles, Jill Dopf
Hardcover
$49.30
BehҪet's Disease/The Diet Solution: A Way of Living Medication Free and Healthy with Behҫet's Disease
Schroeder, Helmut
Paperback
$29.94
The Chronic Diseases: Their Specific Nature And Homeopathic Treatment (1889)
Hahnemann, Samuel
Paperback
$32.44
Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder
Phelps, Jim
Paperback
$22.80
Parkinson's Diet Cookbook: Recipes for Healthy Living and Management of Neurological Diseases
Mark, Anita
Paperback
$11.99
Living Well with Hemochromatosis: A Healthy Diet for Reducing Iron Intake, Managing Symptoms, and Feeling Great
Khesin, Anna
Paperback
$17.05
Porphyria Disease: A Beginner's 2-Week Quick Start Guide on Managing Porphyria through Diet, with Sample Recipes
Winzant, Jeffrey
Paperback
$12.58
Last Ride of the Iron Horse: How Lou Gehrig Fought ALS to Play One Final Championship Season
Joseph, Dan
Paperback
$18.95
Beat the Heart Attack Gene: The Revolutionary Plan to Prevent Heart Disease, Stroke, and Diabetes
Bale, Bradley
Doneen, Amy
Hardcover
$29.44
Vivir Sin Aire. Marc, Una Vida de Lucha Contra Una Enfermedad Rara / Living Without Air
Rodríguez Limón, Celine
Paperback
$22.75
DNA Is Not Destiny: The Remarkable, Completely Misunderstood Relationship Between You and Your Genes
Heine, Steven J.
Paperback
$16.10
Nobody's Listening to Me-If Only They Could C Me: A Daughter's Battle With Sickle Cell
Wright-Hart, Iris
Paperback
$23.74
Just Add Salt: A Single Mother's Quest to Save Her Daughter's Life and Feed Her Soul
Milana Bauer, Leah
Paperback
$18.04
Undiagnosed to Death: How My Mother's Writing Captured Our Family's Hidden Battle with Huntington's Disease
Roberts, Audrey
Paperback
$16.14
The COMT Gene Handbook: Understanding Genetic Variants, Enzyme Activity, Methylation Support, and Lifestyle Insights
Harlan, Nathan D. a.
Paperback
$26.39
Living with CMT: A Mother and Son Journey through Charcot Marie Tooth Disease
Johnson, Dawn
Paperback
$22.74
Joint Hypermobility Syndrome (Ehlers-Danlos): What Causes The Pain?
Maloney Nd, Christopher J.
Paperback
$14.70
No Gallbladder Diet Cookbook: 100+ Delicious Recipes to Help You Stay Healthy and Satisfied After Gallbladder Surgery.
R. Walker, Lois
Paperback
$16.79
Keep My Son: A Mother's Unprecedented Battle and Victory Over her Son's Mental Illness
Borders, Tyler
Paperback
$17.99
Downs Children: The Story of Roland: The Story of Roland: The Story of Roland
Anderson, Robert
Paperback
$18.04
The Mthfr Eating Plan: Methylation supporting Meals and Recipes for your genetic blueprint
Leitch, Florence
Paperback
$31.19
Wired to be Dysfunctional: Our Journey with Myoclonus Dystonia
Lafferty, Jill
Lafferty, Brianna
Paperback
$24.69
Toma El Control de Tu Diabetes Y Revierte Los Hábitos Que Ponen En Riesgo Tu Salud / Take Control of Your Diabetes and Undo the Habits
Aguilar Salinas, Carlos A.
Paperback
$18.00
Boire de l'eau de mer: En tenant compte des découvertes du Dr Hamer sur l'auto-guérison
Martin, Francisco
Paperback
$30.73
Anemia Diet Cookbook: Overcoming Anemia: 50+ Delicious and Nutrient-Packed Recipes for a Sustainable, Healthy Life - Your Essential Guide to
Johnson, Rosalie M.
Paperback
$11.99
Epstein-Barr Virus: A Beginner's Step-by-Step Guide to Managing EBV Naturally Through Diet, With Sample Recipes and a Meal Plan
Winzant, Jeffrey
Paperback
$12.58
Living with Klinefelter Syndrome, Trisomy X, and 47, XYY: A guide for families and individuals affected by X and Y chromosome variations
Cover Msw, Virginia Isaacs
Paperback
$19.20
The Corticobasal Degeneration Patient's Sourcebook: A Guide to Causes, Tests and Treatment Options
Whitehouse Mat, Steph E.
Paperback
$23.92
Your Body Is a Self-Healing Machine Book 2: Understanding the Anatomy of Epigenetics
Siton, Gigi
Paperback
$14.24
Help the Doctor Help You: 41 Secrets and Tips for Self-Advocacy to Get the BEST From Your Appointments
Schwartz, Susie
Paperback
$16.14
Understanding Type 2 Diabetes: Fewer Highs, Fewer Lows, Better Health - Expanded and Updated 2nd Edition
Thomas, Merlin
Paperback
$14.24
The Biogenealogy Sourcebook: Healing the Body by Resolving Traumas of the Past
Flèche, Christian
Paperback
$18.95
Everything you need to know about Epidermolysis Bullosa: Causes, Symptoms, Treatment
Health, Bizmove
Paperback
$11.96
Understanding Marfan Syndrome: A Comprehensive Guide to Symptoms, Diagnosis, and Effective Management Strategies
C. Bryson, Matthew
Paperback
$15.59
Everything you need to know about Eczema - Atopic Dermatitis: Causes, Symptoms, Treatment
Health, Bizmove
Paperback
$11.96
Empowering the Child with Intellectual Disability: A Guide for Parents and Families
Mitra, A.
Paperback
$11.99
Epigenetics: The Death of the Genetic Theory of Disease Transmission
Lan, Ma
Wallach, Joel D.
Schrauzer, Gerhard
Paperback
$21.80
Advanced Treatment for Charcot-Marie-Tooth Disease: Apometry, Nlp, Regression and Hypnosis
Alexsander, Thor Otto
Hardcover
$94.05
Intergenerational: How Sickness and Health Take Root in Families, Organizations, and Relationships
Vignec, Lauren
Paperback
$16.14
my life with PSORIASIS: The story of what finally worked for me and kept me clear for over 30 years!
Gambril, Ross
Paperback
$13.25
Just Add Salt: A Single Mother's Quest to Save Her Daughter's Life and Feed Her Soul
Milana Bauer, Leah
Hardcover
$31.30
Mom, I'll Stop Crying, If You Stop Crying: A Courageous Battle Against a Deadly Disease
Samaras, Robert
Paperback
$31.14
A Bill Of Rights For Periodic Paralysis Patients: The Periodic Paralysis Network A.S.E.A. Series: Volume One
Hunter, Calvin
Knittle-Hunter, Susan Q.
Paperback
$9.54
I Saw His Face Before Me - Living with Sickle Cell Anemia
Burns, Samuel a.
Burns, Patricia a.
Paperback
$11.40
Cleft Lip Surgery Diet: Unlocking The Power Of Nutrition And Empowering Wellness For Lip Surgery Healing
Kayce, Lucas
Paperback
$14.40
How to Love Someone with Cancer: A Supportive Guide to Caring and Connecting Through the Cancer Journey
Oles, Rachel J.
Paperback
$17.99
Nothing More, Nothing Less: A Mother and Daughter's Journey through Love, Inclusion, and Resilience
Dunn, Lisa
Hardcover
$31.19
Everything you need to know about Alopecia Areata: Causes, Symptoms, Treatment
Health, Bizmove
Paperback
$11.96
Your Body Is a Self-Healing Machine Book 3: Understanding How Epigenetics Heals You
Siton, Gigi
Paperback
$14.24
Practical Preimplantation Genetic Testing
Kuliev, Anver
Rechitsky, Svetlana
Simpson, Joe Leigh
Paperback
$99.99
Royal Inbreeding and Other Maladies: A History of Royal Intermarriage and Its Consequences
Cummings, Juliana
Hardcover
$47.45
Biogenealogy: Decoding the Psychic Roots of Illness: Freedom from the Ancestral Origins of Disease
Obissier, Patrick
Paperback
$14.20
Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree
Stark, Lizzie
Paperback
$16.14