Living With HD
HDSA Publications
The Huntington's Disease Society of America has an extensive library of informative books, magazines and pamphlets available. The Marker magazine, an outstanding source of information, is designed to provide information and opinion and relay items of interest to individuals with Huntington's Disease and their families, health care professionals, interested friends and supporters.
Our informative Family Guide Series offers an overview of key areas. Kindly note that the information provided within is not meant as an indicator for a diagnosis or medical treatment.
NOTE: Articles from The Marker magazine, the Family Guide Series and the Fast Facts about HD pamphlet are the property of the Huntington's Disease Society of America. Reproduction of this information in whole or in part without the express permission of the Huntington's Disease Society of America is strictly forbidden.
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**Publications marked with an asterick are also available for download.
To download a publication click 'Download'.
To purchase a publication click 'Purchase'.
You may also order a hard copy of these publications by calling 800-345-4372 ext 219. To go directly to the publications store click here.
Click here for a printable version of publications listing/order form.
General Information
Genetics and Genetic Testing
Caregiving
Clinical Care
Physical and Occupational Therapy
Juvenile Huntington's Disease
Behavior
Nutrition and Swallowing
Personal and Family Issues
Research
DVDs
Others
Foreign Language Publications
Law Enorcement Kit
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General Information |
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Fast Facts About HDHDSA, 2010. Presents key information about HD and HDSA.
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Free, limit one per person**
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Huntington's Disease: A Guide for FamiliesHDSA, 2009, 21-page booklet. This short booklet offers an overview of HD.
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Lifting the Veil of Huntington's DiseaseRecommendations to the field from the Huntington's Disease peer workgroup.
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Download Only
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Genetics and Genetic Testing |
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Genetic Testing for Huntington's Disease: A Guide for FamiliesHDSA, 2009, 18-page booklet. An introductory guide to genetic testing for HD.
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$2.00 each** |
Genetic Testing for Huntington's Disease: Its Relevance and Implications.US Huntington's Disease Genetic Testing Group Revised 2003, 27 Pages. Presents the current diagnostic usefulness of genetic testing for HD and discusses the results of surveys that evaluate issues related to testing individuals at risk for this disease. This publication is extremely useful not only to those working in the HD community, but to all professionals who care for patients with adult-onset genetic disorders.
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Caregiving |
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A Caregiver's Guide to Huntington's DiseaseWEMOVE 2011, 20 Pages. An easy reference for caregiver's caring for a loved one with Huntington's disease. Includes practical tips and advice.
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A Caregiver's Handbook for Advanced-Stage Huntington's DiseaseJim Pollard, 2000, 69 pages. Written by medical professionals for at-home or care-center caregivers, this book addresses the unique circumstances presented by late-stage HD. Practical tips about how to care for an individual with HD cover eating and nutrition, communication, safety, hygiene, cognitive changes, emotional changes, medical issues and much more. Extensive indices provide a variety of medical, social and product resources.
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Long Term Care: A Guide for FamiliesSuzanne Imbriglio, PT, Virginia Goolkasian LSW/MS, Ann Murfitt LICSW. This pamphlet contains information about skilled nursing facilities, addressing special needs of HD patients and how to advocate for your loved one in a Long Term Care Facility.
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$2.00 each**
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Clinical Care |
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A Physician's Guide to the Management of Huntington's Disease (3rd Edition)Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD, HDSA 2011. Includes in-depth information on principles of treatment, genetic testing, medications, management of cognitive and behavioral problems and a new section with case studies.
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Free click here. |
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Juvenile Huntington's Disease |
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The Juvenile HD Handbook: A Guide for Families and Caregivers -- 2nd Edition
Martha Nance, MD, 2007. This book provides readers with information about Juvenile HD, including genetic testing, when it is appropriate to perform the test, how to understand your HD affected child, and what to do if you find yourself in compromising situations as well as where to turn for help.
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$7.00 each** |
Juvenile HD: A Guide for FamiliesEdited by Martha Nance, MD, Randi Jones PhD, Suzanne Imbriglio PT & Betsy Gettig MS/CGC. This pamphlet defines Juvenile HD, diagnosis, specific medical issues, prognosis of the disease, financial, legal & social issues and more.
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$2.00 each** |
The Juvenile Onset HD Resource DirectoryComprehensive resource guide for families of children affected by Juvenile Onset HD. Information about federal, state and local programs.
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$10.00 each |
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Personal and Family Issues |
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Living at Risk for Huntington's Disease: Walking the TightropeRandi Jones, PhD, Huntington's Disease Society of America, 1998, 84 pages. An in-depth examination of issues and problems common to people at risk for HD. Offering practical guidance and professional insights, this book includes sections on relationships, coping, predictive testing, resources, planning ahead, and life after a positive test result.
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$8.00 each |
Is Daddy OK?Janet Howes, ACSW 2004, 24 pages Book is ideal for kids, age 6 through 12 who have a parent, family member or other adult in their life who is affected by HD. Book is intended to serve as tool for parents to read along with children or as a starting point for discussions about how the story relates to their specific experiences. A percentage of the proceeds from this book go to HDSA programs.
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$12.95 each |
Talking with Kids: A Guide for FamiliesHDSA, 2012, 26-page booklet. An introductory guide to talking about Huntington’s disease with kids, youth, and teens.
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Research
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Toward a Cure - Current IssueHighlights recent research advances.
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Free, limit one per person**
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The Marker - Current IssueHighlights recent research advances.
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free, limit one
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Past Editions of Toward a Cure |
Download Only
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Past Editions of The Marker
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Download Only
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DVDs
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Caring DVDHuntington Society of Canada, 1985. 110 Minutes. Discusses four major care topics: 1. How to Deal with Difficult Behavior 2. Mobility 3. Speech and Communication 4. Nutrition and Swallowing
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$20.00 each |