Touched by Huntington´s Disease – Life Stories and Psychological Reflections


This book, which originally appeared in Danish, contains a collection of stories about life with Huntington’s Disease (HD): the doubts, the grief, the anxiety, the anger and the frustration. Yet it also speaks of the opportunities, the resilience and hidden strength awakened, and of the personal struggles to rediscover the joy of living in spite of an inherited illness.

HD is a condition that reaches into the past and into the future. The personal narratives are preceded by a brief medical introduction to HD, which runs through its genetics, symptoms and progression. There is also a section dealing with psychological issues that may arise as individuals and families live with and through the disease, and outlining methods and techniques used in therapy sessions. Although the book’s narrators, health professionals and social and medical settings are Danish, this English edition has been adapted to suit a broader context that will be recognizable in most developed countries with comprehensive health-care systems.

Through taking a neuropsychological approach to Huntington’s Disease, and other brain disorders and the problems they cause, I have worked for years with a wide variety of actors in the field: health-care providers, such as general practitioners, hospitals, medical specialists and specially adapted residential units, and also municipal authorities and the Danish HD patient association. But through it all, what has affected me most profoundly are the personal stories and the stamina and courage I have seen in people striving to develop on a personal level. I gradually became aware that there was virtually no written material in Danish about the experience of being affected by HD, or being near and dear to someone who is. Quite a few people with HD who have visited my neuropsychology clinic in Denmark have told me they wished they could have read about the experiences of others in a similar situation.

My main motivation behind the Danish version of the book was to remedy that lack of material. I hope this translation will be a valuable contribution to the body of material that already exists in English, making the book accessible to a wider audience beyond Scandinavia and the Nordic region.

This is a book for families whose lives are touched by HD. The potential readership includes non-tested at-risk persons, healthy carriers of the disease, affected patients, family members, and friends and acquaintances who would like to learn more. I also hope the book will find interested readers among the professionals who work with HD and similar neurodegenerative disorders.

Lona Bjerre Andersen, Aarhus, Denmark, 2017

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Published by FRYDENLUND PUBLISHERS with financial support from TEVA Denmark A/S.