Huntington's Disease Youth Organization

Huntington's and MeAlison Gray Young people affected by Huntington's need to have correct and up to date information as early as possible young people want to know the truth and this must be provided in such a way...Find out more...
Talking to kids about Huntington's DiseaseBonnie Hennig Talking to Kids About Huntington's Disease is a 45-page book designed for caregivers of children who have a loved one affected by HD. The book contains practical information on why...Find out more...
The Woman Who Walked into the SeaAlice Wexler This title presents a groundbreaking medical and social history of a devastating hereditary neurological disorder once demonized as 'the witchcraft disease'. When Phebe Hedges, a woman...Find out more...
Mapping Fate: A Memoir of Family, Risk and Genetic ResearchAlice Wexler This is an account of the how Huntington's disease affected one family. The author tells of how her mother died of the disease, how she herself stood a 50-50 chance of inheriting it,...Find out more...

Hurry up and WaitKTYJPover 1 year ago116116 people shared this0 commentsJimmy Pollard To those it touches and their carers, Huntingto n's Disease presents an ongoing series of challenges to accommodate its changes in thinking. "Hurry up and Wait!" is a set of exercises to simulate the cognitive difficulties faced by those with HD, a collection of tips to accommodate them in your home or care home, a strategy to develop new approaches to solving care problems and commentary on common problems faced by family carers and those they love.Buy the book on Lulu...Find out more...

Huntington's and MeTYJPover 1 year ago117117 people shared this0 commentsAlison Gray Young people affected by Huntington's need to have correct and up to date information as early as possible young people want to know the truth and this must be provided in such a way that it is informative and factual, as well as supportive. With predictive testing available to those eighteen and over, the young must have this information early so that they have time to consider the implications of testing, not only on themselves, but also their family and friends.This book provides the latest information about HD and offers strategies for coping with the immediate and long-term...Find out more...

When Given LemonsTYJPover 1 year ago158158 people shared this0 commentsLauren Holder Lauren Holder is a young woman who deals daily with the struggles of Huntington's Disease, whether it is in her own personal life, a member of her family, or a friend of the Huntington's Disease community. She first learned of Huntington's Disease at the age of fifteen after her grandfather was diagnosed with it. This is the story of her relationship with her grandfather and how Huntington's Disease played such a huge role in it, taking their relationship from almost nonexistent to something special, a bond that changed her life.Buy the book on the author's site...Find out more...

The Woman Who Walked into the SeaTYJPover 1 year ago9494 people shared this0 commentsAlice Wexler This title presents a groundbreaking medical and social history of a devastating hereditary neurological disorder once demonized as 'the witchcraft disease'. When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind and mood her neighbours called St. Vitus' dance. Doctors later spoke of Huntington's chorea, and today it is known as Huntington's disease. This book is the first history of Huntington's in America. Starting with the life of Phebe...Find out more...

Mapping Fate: A Memoir of Family, Risk and Genetic ResearchTYJPover 1 year ago9999 people shared this0 commentsAlice Wexler This is an account of the how Huntington's disease affected one family. The author tells of how her mother died of the disease, how she herself stood a 50-50 chance of inheriting it, and how her sister and father sought first to find the gene and then find a cure.Buy the book on Amazon...Find out more...

Gene Hunter Nancy WexlerTYJPover 1 year ago118118 people shared this0 commentsAdele Glimm Nancy Wexler is a hunter. Her quarry is the gene responsible for a fatal, inherited sickness called Huntington's disease. Nancy's work is a breathtaking race against time - not only for others but maybe for herself, as well. Nancy Wexler is the daughter of a Huntington's patient and is at risk for this disease. Finding this gene is a vital step toward preventing or curing Huntington's and thus saving lives. Nancy's work takes her all over the world, specifically to small villages in Venezuela where the mysterious gene affects more people than anywhere else on the globe. Blood...Find out more...

Walking the Tightrope: Living at Risk for HDTYJPover 1 year ago176176 people shared this0 commentsRandi Jones An in-depth examination of issues and problem 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.Find out more and buy the book on the HDSA site...Find out more...

Learning to Live with HDTYJPover 1 year ago8888 people shared this0 commentsSandy Sulaiman Huntington's Disease (HD) is a hereditary illness passed on via a defective gene. There is a fifty per cent chance of inheriting it from a parent and there is yet no cure. "Learning to Live with Huntington's Disease" is one family's poignant story of coping with the symptoms, the diagnosis and the effects of HD. This book presents the struggles and strengths of the whole family when one member loses their future to a terminal illness. Told by the sufferer and other significant family members, the individuals describe the burden of watching yourself and others for symptoms of...Find out more...

It's a BirdTYJPover 1 year ago167167 people shared this0 commentsSteven Seagal A graphic novel that follows a young man and his feelings and experiences of Huntington's disease.Buy the book on Amazon...Find out more...

Talking to kids about Huntington's DiseasePPover 1 year ago8686 people shared this0 commentsBonnie Hennig Talking to Kids About Huntington's Disease is a 45-page book designed for caregivers of children who have a loved one affected by HD. The book contains practical information on why and how to talk to children about HD. It outlines the differences in kids ages and developmental stages and includes many examples. This book is a wonderful resource to family members as a teaching tool and will enable caregivers to feel more comfortable and confident in dealing with this topic.Find out more and buy the book on the author's site...Find out more...

Someone Else's LifeTYJPover 1 year ago156156 people shared this0 commentsKatie Dale How can you face your future when your past it a lie? When Rosie Kenning's mother, Trudie, dies from Huntingdon's disease, her whole world falls apart. Not only does Rosie desperately miss her mum, but now she has to face the fact that she could have inherited the fatal illness herself. Until she discovers that Trudie wasn't her biological mother at all ...Rosie is stunned. Can this be true? Is she grieving for a mother who wasn't even hers to lose? And if Trudie wasn't her mother, who is? But as Rosie delves into her past to discover who she really is, she is faced with a...Find out more...