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. 

Country: USA

Pages: 48

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.

Country: USA

Pages: 90

Title: Are your shoes too big? (2022)

Author: Cherie Valovcin

Summary: This book is about the struggle of one family with HD.

Country: USA

Pages: 18

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”.

Country: Spain

Pages: 64

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.

Country: USA

Pages: 92

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.

Country: USA

Pages: 253

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.

Country: Canada

Pages: 369

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.

Country: USA

Pages: 336

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.

Country: UK

Pages: 208

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.

Country: UK

Pages: 160

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.

Country: UK

Pages: 219

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.

Country: USA

Pages: 27

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.

Country: USA

Pages: 246

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.

Country: USA

Pages: 32

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.

Country: UK

Pages: 32

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.

Country: USA

Pages: 26

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.

Country: USA

Pages: 96

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.

Country: Canada

Pages: 112

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.

Country: Ireland

Pages: 11

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.

Country: USA

Pages: 288

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.

Country: UK

Pages: 340

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.

Country: USA

Pages: 129

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.

Country: USA

Pages: 157

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.

Country: USA

Pages: 79

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.

Country: UK

Pages: 368

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

Pages: 112

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.  

Country: USA

Pages: 296

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.

Country: USA

Pages: 560

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.

Country: Canada

Pages: 115

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.

Country: USA

Pages: 400

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.

Country: USA

Pages: 657

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.

Country: Germany

Pages: X

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.

Country: USA

Pages: 312

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.

Country: USA

Pages: 190

Title: Huntington's Disease: Prevalence, Pathogenesis and Treatment (2017)

Author: Christina Hughes

Summary: This book discusses the prevalence, pathogenesis, and treatment of HD.

Country: USA

Pages: 72

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.

Country: Canada

Pages: 246

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.

Country: USA

Pages: 236

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.

Country: USA

Pages: 352

Title: Rules for 50/50 Chances (2015)

Author: Kate McGovern

Summary: This is a novel about the complex decision of going through the HD genetic test.

Country: USA

Pages: 368

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.

Country: USA

Pages: 380

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.

Country: USA

Pages: 120

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.

Country: USA

Pages: 92

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.

Country: USA

Pages: 170

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.

Country: UK

Pages: 512

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.

Country: UK

Pages: 344

Title: Me without you (2014)

Author: Kelly Rimmer

Summary: This novel shares the story of a couple and the impact that HD has in their lives.

Country: USA

Pages: 300

Title: A Weekend Getaway (2014)

Author: Karen Lenfestey

Summary: This novel is about the questions HD raises in a woman with complicated family ties.

Country: USA

Pages: 305

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.

Country: USA

Pages: 380

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.

Country: USA

Pages: 384

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.

Country: USA

Pages: 108

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.

Country: USA

Pages: 160

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. 

Country: USA

Pages: 338

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. 

Country: UK

Pages: 200

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.

Country: Germany

Pages: 80

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.

Country: USA

Pages: 142

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.

Country: USA

Pages: 253

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.

Country: USA

Pages: 176

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.

Country: UK

Pages: 304

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.

Country: USA

Pages: 250

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.

Country: USA

Pages: 432

Title: Could I have this dance? (2002)

Author: Harry Kraus

Summary: This is a novel about a surgeon discovering she may have inherited HD.

Country: Canada

Pages: 172

Title: Saving Jasey (2002)

Author: Diane Tullson

Summary: This is a novel about a troubled teenager trying to help a friend who is from an HD family.

Country: USA

Pages: 528

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.

Country: USA

Pages: 319

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.

Country: USA

Pages: 438

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.