In this section, we have compiled a number of books of different genres that are related to Huntington’s Disease. You can find basic information about each book and where to buy or read it online.
If you have read some interesting HD- related book that you find is missing from this list, please do not hesitate to contact us and we will add it to our site.
Title: HUNTINGTON’S DISEASE HEROES: Inspiring Stories of Resilience from the HD Community (2023)
Author: Erin Paterson, with stories from Charlie Burke, Emma Burnip, Ashley Clarke, Andrea Florian, Scarlett J. Florence, Lindsay Groot, Josh Halliday, Emma Harris, Rob Haselberg, Jenny Louise Johnson, Brandon Khoury, Sarah Khoury, Shelby Lentz, Domonique Claire Link, Dr. Tamara Maiuri, Joshua Marshall, Judy Melville, Paramjit Oberoi, Erin Paterson, Erin Pryce, Archana Ravada, Mackenzie Remillard, Gabrielle Russo, Joanne Somerville, Mandy Urbach, and Emma Wajswasser. Special contributions from Erika Boulavsky, Jenna Heilman, Charles Sabine, and Dr. Malvindar Singh-Bains
Summary: The goal of this book is to share inspiring stories from the underrepresented HD community. We will meet true heroes who fight every day the fear and stigma surrounding Huntington’s disease. By sharing how their lives were shaped by the challenges they have faced, the authors want to empower the rare disease community and encourage others to speak up. 50% of the book sales will be donated to the Huntington’s Disease Youth Organization.
Title: One Month of You (2023)
Author: Suzanne Ewart
Summary: This is a love story haunted by HD. Jess has inherited Huntington’s disease from her mother that she cares for. Jess is isolated, while facing her own future. One fine day, Jess meets Alec, who is determined to break down the barriers and spend one month together with her. This book is about a love affair with HD in the background.
Title: Broken petals (2022)
Author: Tasha Hutchison
Summary: This book is the debut novel of the author. It tells the story of a young woman, Brooklyn, who was diagnosed with Huntington’s Disease at 19. This diagnosis has deeply impacted her life and may affect her cherished dream of having a family. This story is about coping, resilience and self-discovery.
Title: Hacking Huntington's: Tips and Tricks (2022)
Author: N.C. Smith
Summary: This book gives you recommendations on how to solve many of the problems HD brings.
Title: Surviving Huntington's Disease (2022)
Author: Dr. Steve Aaron
Summary: This book has relevant information about HD features, symptom management and available therapies to help you “get your life back”.
TITLE: THE PERSON WITH HUNTINGTON'S DISEASE: FUNCTIONAL AND COGNITIVE EVALUATION (2022)
Author: Hugo Moita dos Santos, Alexandra Dinis, Magda Guerra
Summary: Many therapeutic strategies have been tested, but the complexity of the multiple mechanisms leading to the neurodegeneration observed in the disease contribute to the lack of success in the search for an effective treatment. It is a disease with progressive evolution and there is still no specific treatment available, however an adequate orientation of the person and his family on the benefits of a correct diet, practice of rehabilitation exercises and pharmacological treatment contribute to improve their quality of life.
Title: HUNTINGTON'S DISEASE GUIDE: THE COMPLETE GUIDE TO HUNTINGTON'S DISEASE (2022)
Author: Ryan Beucke
Summary: The tips inside, composed by a medical caretaker who has been a parental figure for her mother by marriage, sex, and two children with HD, are intended to assist guardians with exploring their direction through the Huntington’s disease road.
TITLE: HD COOKBOOK (2022)
Author: Sharon Thomason
Summary: HD cookbook is a book for families impacted by HD, which was written by HD families for HD families and reviewed by a speech language pathologist and a dietician. The book was recently published by the US organization Help4HD and it contains fresh ideas about high-calorie recipes that keep food tasty and safe for people living with HD. You will also find tips and ideas for different adaptive equipments that can help during eating time.
Title: The Perfect Move: Good Intentions Aren’t Always What They Seem (2021)
Author: Alisa H. Klinger
Summary: This is a thriller about a new yorker, Hope Klein, that moves into an upscale suburban community of Long Island. There, Hope gets to know her neighbors – and one of them has Huntington’s disease. Everything was perfect until a dead body is discovered and the truth must be found.
Title: Anticipation (2021)
Author: Melodie Winawer
Summary: This is a historical fiction that weaves together fascinating medical research, suspense and HD. The plot brings the reader to Mystras, Greece, where Helen and her son meet Elias, a tour guide, and the history of the noble Lusignan family affected by HD. This book addresses Huntington’s disease in a loose and entertaining way.
Title: TESTING KNOWLEDGE: TOWARD AN ECOLOGY OF DIAGNOSIS, PRECEDED BY THE DINGDINGDONG MANIFESTO (2021)
Author: Katrin Solhdju, Alice Rivières
Summary: “Testing Knowledge: Toward an Ecology of Diagnosis”takes a look at the HD predictive genetic testing and the implications of medical foreknowledge to our lives. “Testing Knowledge” is preceded by the “Dingdingdong collective’s Manifesto” (2013), which tells the story of the young Alice Rivières who took the HD presymptomatic genetic test. This text debates all the ethical, psychological, and existential issues inherent to medical predictions.
Title: All Good Things (2021)
Author: Erin Paterson
Summary: In this memoir, the author, who tested positive for HD, tells the extraordinary story of how she, and her husband, dealt with life’s hurdles and started their journey to have children.
Title: Fade Into the Bright (2021)
Author: Jessica Koosed Etting, Alyssa Embree Schwartz
Summary: This book is about handling being at risk for HD and trying to fly away from this inheritance.
Title: Forgetting and finding myself (2021)
Author: Charlotte Raven
Summary: Charlotte Raven is a renowned English journalist who was one of the keynote speakers at the EHDN Conference 2022. This book is her honest and intelligent account of how her life has changed with HD.
Title: HUNTINGTON'S DISEASE 3rd EDITION (2021)
Author: Oliver Quarrell
Summary: This book was written by a clinical geneticist with an expertise in HD for HD families and their carers. It is an introduction to the physical, behavioural, and emotional features of the disease, the important role of genetics and options for those at risk of developing HD, plus the symptom management and treatment. Importantly, patient perspectives are included throughout, offering real-life accounts from the HD community.
Title: Somebody up there likes me (2021)
Author: Melanie Pearson
Summary: This is the personal account of the author about growing up in the shadow of Huntington’s Disease and how the disease impacted her family over the years.
Title: Brave Breanna (2021)
Author: Shelby Lintz
Summary: This is a book about Juvenile Huntington’s disease and 8-year-old brave Breanna. The book was written by Shelby Lentz after her 14-year-old sister had passed away after a long struggle with Juvenile HD.
Title: Huntington’s Disease: Causes, Diagnoses and Treatment (2021)
Author: David Mercury
Summary: This book presents the causes, diagnosis, and therapeutic advances in Huntington’s disease in the most comprehensible language. Different approaches, evaluations, methodologies, and studies on HD, as well as the latest research and therapeutic advances have been included.
Title: Finding Nana's Smile (2020)
Author: James Pollard
Summary: The famous HD expert James Pollard teaches HD families how to present the disease features to kids between 2 and 5 years old.
Title: Harry needs a hug:
A story for children learning to deal with Huntington’s Disease (2020)
Author: Emma Terranova
Summary: The mother and grandmother of the author were affected by Huntington’s disease. In 2018, Emma Terranova founded the “Campaign for my Brain” to raise awareness for HD and other neurological disorders. This book helps educate children about HD, as a legacy for Emma’s family.
Title: Grandma Has Huntington's Disease, and It's Okay (2020)
Author: Dr. Kelsey M. Finn
Summary: This book is a tool to communicate with children about Huntington’s disease and help them understand what HD means for them and their family members affected by this condition.
Title: SHATTERED DREAMS-BUT HOPE (2020)
Author: Laquita Higgs, Elton Higgs
Summary: The authors have been long-term caregivers to two adopted daughters with early onset Huntington’s Disease (HD). This book is their way to speak about their life experience, including speaking about the role of Christian faith in coping with the disease impact.
Title: Hunting Down Huntington’s: Departure for the Hunt (2020)
Author: Molly Kay Moss
Summary: This book aims to increase the awareness about HD and inform the reader of the origins, history and ongoing research of this condition. All royalties from the book will be directed to the Huntington Society of Canada.
Title: When I Edit with Assistive Technology (2020)
Author: Carrie Jade Williams
Summary: This award-winning book is narrated by a person with HD who shares what it means to live and think when your brain is changing and cannot cope with the environmental demands.
Title: Marma Rabbit boy (2020)
Author: Roberto Ruiz Céspedes
Summary:Teo, a Cantabrian filmmaker living in Madrid, receives an unexpected call from his sister Marma, whom he lost track of 33 years ago. She has changed a lot, her hands are shaking and her body is emitting spasms that Teo does not understand. She has Huntington’s disease. Marma announces to him that she has a psychic daughter called Tesa who has heard of his existence and wants to meet him.
Title: Can You Help Me?: Inside the Turbulent World of Huntington Disease (2019)
Author: Thomas D. Bird MD
Summary: The author of this book is a neurogeneticist who shares the surprising, insightful, challenging, and even encouraging stories of patients and families living with Huntington’s disease.
Title: If you were here (2019)
Author: Alice Peterson
Summary: This is a sensitively written book about HD and the way It impacted three generations of one family.
Title: Living with Huntington’s Disease (2019)
Author: Sharon McClellan Thomason
Summary: The author shares her experiences and what she has learned by having a child diagnosed with Huntington’s disease.
Title: Living With Huntington's Disease: Challenges, Perspectives and Quality of Life (2019)
Author: Sherman Howell
Summary: This book examines the wide range of HD motor and non-motor symptoms and how they impact the quality of life of those affected by the disease.
Title: WALKING TOGETHER WITH HUNTINGTON'S DISEASE: ONE FAMILY'S 12-MONTH JOURNEY WITH HD (2019)
Author: Sharon Hammond Nordstrom
Summary: This book presents the experience of one couple following a faith-based 12-step program to better deal with HD.
Title: You Me Everything (2018)
Author: Catherine Isaac
Summary: This is a sweet, sentimental, and hopeful book about a family’s journey of love and belonging in the face of HD.
Country: Slovak republic
Title: Huntington Disease Principles and practice of nutritional management (2018)
Author: Jiří Klempíř and Alžbeta Mühlbäck
Summary: The aim of this publication is to summarize all relevant and practical information about the management of nutritional disorders in Huntington’s disease.
Title: Food for Huntington’s Disease (2018)
Author: Musthafa Mohamed Essa, Thamilarasan Manivasagam, Arokiasamy Justin Thenmozhi, Qazi Hamid
Summary: This book explores the benefits of different foods and nutrients for managing the nutritional problems in Huntington’s disease.
Title: The Molecular and Cellular Basis of Neurodegenerative Diseases: Underlying Mechanisms 1st Edition (2018)
Author: Michael S. Wolfe
Summary: This book presents the pathology, genetics, biochemistry, and cell biology of the major human neurodegenerative diseases, including Huntington’s disease. It aims to be an invaluable source for researchers in the field.
Title: In-Between Years: Life after a positive Huntington's Disease test (2018)
Author: Steven Beatty
Summary: This book presents a first-hand experience of what it is like to go through the “in-between years”, i.e., the years following a positive HD genetic test result but before HD symptoms take hold. All royalties from the book will be directed to the Huntington Society of Canada.
Title: You’ll miss me when I’m gone (2018)
Author: Rachel Lynn Solomon
Summary: This is a novel about twins dealing with the results of an HD genetic test.
Title: Huntington’s Disease (2018)
Author: Sophie V. Precious, Anne E. Rosser, Stephen B. Dunnett
Summary: This book provides a manual and guidebook about a wide range of techniques used by leading laboratories engaged in HD research across the world. A useful resource for researchers committed with Huntington’s disease studies.
Title: Paul and the Enchanted Workers (2017)
Author: Gizem Goerme, Selda Gueduek and Gizem Vural
Summary: This German book is the result of a high school project and explains HD to children through the story of 8-year-old Paul.
Title: Watching their dance (2017)
Author: Therese Marie Crutcher-Marin
Summary: This book chronicles the life of a couple and their journey through the uncertainty of Huntington’s disease.
Title: Huntington's Disease: Prevalence, Pathogenesis and Treatment (2017)
Author: Christina Hughes
Summary: This book discusses the prevalence, pathogenesis, and treatment of HD.
Title: I Fight for Understanding: 31 Days of Tips for Coping With Huntington's Disease (2017)
Author: Ginnievive Patch
Summary: This collection of tips for caregivers of people with HD, written by a nurse from an HD family, was published as a part of Help 4 HD International HD/JHD Awareness campaign.
TITLE: DANCING WITH ELEPHANTS (2017)
Author: Jarem Sawatsky
Summary: When the author was diagnosed with Huntington’s Disease he found there was nothing for those living with an incurable illness. Now he’s bringing his findings and insights to you in this empowering mindfulness guide. If you like touching stories, mindful wisdom, and a touch of irreverent humor, then you’ll love this book.
Title: SUDDENLY DARK - HUNTINGTON'S DISEASE: MY FAMILY'S DEADLY SECRET (2016)
Author: George William Knauer
Summary: The author talks about his challenging life and how it’s really like to deal with HD.
Title: Inside the O'Briens (2015)
Author: Lisa Genova
Summary: A novel from a bestselling author and neuroscientist that follows an US family coping with HD.
Title: Life interrupted (2015)
Author: Katie Lee Jackson, Vicki Owen, Pat Wolf, Sharon McClellan Thomason, Lisa Davenport, Ben Lamoreau, Frances Saldana
Summary: This book presents the testimonies of twelve HD patients and caregivers, who share their true stories of dealing with HD. It is published by Help 4 HD International.
Title: Activities for the Family Caregiver: Huntington's Disease (2015)
Author: Scott Silknitter, Vanessa Emm, Robert Brennan
Summary: This is a book that aims to help caregivers to enhance their own quality of life and the quality of life of their loved ones through information on leisure and daily activities.
Title: Living With Passion (2015)
Author: Alexandra Kathleen Boothby
Summary: This memoir is about the journey of a young woman who is living with Huntington’s disease.
Title: An Affair Worth Remembering With Huntington's Disease (2014)
Author: Debbie Pausig
Summary: This book illustrates the life of a family impacted by HD and wants to reach those affected by Huntington’s Disease, the spiritual community, the caregivers, and the medical community.
Title: HUNTINGTON'S DISEASE (2014) 4th Edition
Author: Gilian Bates, Sarah Tabrizi, Lesley Jones
Summary: This book presents a comprehensive summary of the current knowledge of this disease, including the major scientific and clinical advances that have happened during the last years in the HD world.
Title: Hummingbird (2013)
Author: Deborah Goodman
Summary: This is an inspirational true story of a woman who travelled the world under a cloud of uncertainty caused by HD.
Title: A Partial History of Lost Causes (2012)
Author: Jennifer duBois
Summary: This awarded debut novel presents the complexities of HD through the eyes of a young American woman.
Title: Sisterhood Everlasting (2012)
Author: Ann Brashares
Summary: This is a series of 5 books about the adventures of four friends. In the last book of the series, one of the friends discovers she has HD.
Title: CARING FOR FAMILY MEMBERS AFFECTED BY HUNTINGTON’S DISEASE (2010)
Author: Alison Lowit
Summary: This book presents a study focusing on important issues for spousal carers providing care to one or more family members affected by HD.
Title: THE TEST: LIVING IN THE SHADOW OF HUNTINGTON'S DISEASE (2010)
Author: Jean Barema
Summary: This is a memoir of the five years the author spent deciding whether to take the test for HD.
Title: NEUROBIOLOGY OF HUNTINGTON’S DISEASE: APPLICATIONS TO DRUG DISCOVERY (2010)
Author: Donald C. Lo & Robert E. Hughes
Summary: The book discusses the basic neurobiology of Huntington’s disease and how its monogenic nature confers enormous practical advantages for translational research, including the creation of robust experimental tools, models, and assays to facilitate discovery and validation of molecular targets and drug candidates for HD.
Title: JUVENILE HUNTINGTON'S DISEASE AND OTHER TRINUCLEOTIDE REPEAT DISORDERS 1st EDITION (2009)
Author: Oliver W.J. Quarrell, Helen M. Brewer, Ferdinando Squitieri, Roger A. Barker, Martha A. Nance, G. Bernhard Landwehrmeyer
Summary: This book was edited by the Juvenile HD working group of the European Huntington’s Disease Network and summarizes the clinical and scientific knowledge available on Juvenile HD, while providing accounts from families affected by this condition.
Title: SEXUALITY & PARTNERSHIP IN HUNTINGTON'S DISEASE AND MULTIPLE SCLEROSIS (2009)
Author: Eva Schmidt
Summary: Huntington’s Disease (HD) and Multiple Sclerosis (MS) are both severe chronic diseases. Partnership problems and sexual dysfunction is often reported in chronic diseases but many physicians feel uncomfortable or inadequately trained to discuss these issues with their patients. This book deals with the topic of sexuality and partnership in HD and MS and contains a detailed description of the existing literature as well as the investigations and findings of a study with HD and MS patients interrogated by a personal interview and standardised questionnaires.
TITLE: When Given Lemons (2008)
Author: Lauren Holder
Summary: The author is a young woman who deals daily with the struggles of Huntington’s Disease at a personal, familial, and social level. This is the story of her relationship with her grandfather, who was diagnosed with HD when she was fifteen years old, and how this bond has changed her life. Lauren is an active member of HD-CAB, the Community Advisory Board created by EHA, HDYO and IHA.
Title: Hurry up and wait (2008)
Author: James Pollard
Summary: This book is a guide to deal with HD cognitive symptoms. It describes common problems faced by carers, provides a set of exercises to simulate the cognitive difficulties faced by people with HD and gives you a collection of tips to accommodate them in your home or care home.
Title: The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease (2008)
Author: Alice Wexler
Summary: This book gives a unique view of the changing meanings of heredity, disability, stigma, and medical knowledge, using HD as model. It was written by one of the most influential and knowledgeable HD advocates in the world.
Title: Learning to live with HD: One Family's Story (2007)
Author: Sandy Sulaiman
Summary: This book is a first-hand account of the challenges faced by a family impacted by HD.
Title: Saturday (2006)
Author: Ian McEwan
Summary: From a famous and best-selling author, this novel is about the challenges of the brain, and one its main characters has HD.
Title: Double Helix (2004)
Author: Nancy Werlin
Summary: This is a novel about an 18-year-old boy who is involved with genetic studies and is at risk for HD.
Title: Woody Guthrie: A Life (1999)
Author: Joe Klein
Summary: The definitive biography of the famous American folk singer who impacted the HD world in many ways, namely by being at the core of the first HD patient organizations.
Title: MAPPING FATE: A MEMOIR OF FAMILY, RISK, AND GENETIC RESEARCH (1996)
Author: Alice Wexler
Summary: This book was written by one of the main patient advocates from the worldwide HD community and tells the story of a family at risk for HD.
Title: HUNTINGTON’S DISEASE: MAJOR PROBLEMS IN NEUROLOGY (1996) 2nd EDITION
Author: Harper, Peter S.
Summary: This book was written by a world-renowned research team and covers the basic science and clinical management of HD.