Family experiences: Part I, Diagnosis and early stages

Helen M. Brewer and Marie McGill

in Juvenile Huntington's Disease

Published on behalf of Oxford University Press

Published in print January 2009 | ISBN: 9780199236121
Published online November 2012 | e-ISBN: 9780191753213 | DOI:
Family experiences: Part I, Diagnosis and early stages

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This chapter, along with Chapter 2, is based on real accounts from families and are extremely valuable for setting the clinical and scientific chapters in context. We chose to publish them with minimal editing. Whilst the perceptions of the writers are real, where others are mentioned it has to be borne in mind that the perceptions of these third parties are not known. The rightful authors of the first two chapters of this book are the families who have made a huge personal sacrifice to allow us to share, with at times such complete honesty, their challenges. These first two chapters give the reader some insight into the impact that juvenile Huntington’s disease (JHD) has on the whole family over a long period of time. Families feel that contributing to this book has given them a great opportunity to open people’s eyes, minds, and hearts to try to get across the impact this devastating disease has on them. Families also speak about those whom they have had contact with throughout their journey with JHD. In many cases families talk about when this contact has been a positive experience for them and how much they have been helped by other people, and in some cases less so. These chapters are important for all readers, to help put later clinical and scientific chapters into context, and we are sure that everyone will gain something by reading them. We begin this book by hearing from those whose lives have been so irrevocably and relentlessly altered by JHD; the young people with JHD and their families who care for them. It is perhaps a testimony to the challenges young people face living with JHD that their contribution to this book is given only by one young man. Columb was 26 years old when he died as a consequence of JHD in 2006. The remaining contributions are from the parents and one sibling of children and young people living with JHD. We have chosen to divide these contributions into those that describe the earlier stages, including experiences of diagnosis, and those that describe the later stages. Many families living with JHD describe facing each challenge as it is presented to them, and not looking too far ahead. We hope that by dividing the two chapters as described readers can be better prepared for the areas that they may wish to find out more about. Those contributions that talk about the later stages have been put together in Chapter 2 .

Chapter.  10101 words. 

Subjects: Neurology

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