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Facing Huntington's Disease A publication of the Huntington's Disease ...

Source: huntingtondisease.tripod.com
Topic: Huntington
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Sort Desciption: This guide has been written for sufferers, families, friends, and anyone else who is connected with Huntingtons Disease, from now on referred to as HD. The authors are three social workers who between them have a wide experience of HD in its various aspects and of working with families where HD is present. ...

Content Inside:
This guide has been written for sufferers, families, friends, and anyone else who is connected with Huntington's Disease, from now on referred to as HD. The authors are three social workers who between them have a wide experience of HD in its various aspects and of working with families where HD is present.

In a publication of this size, it is not possible to cover every aspect or to discuss any particular issue in great depth. Our aim has been threefold: firstly, we describe the illness in simple terms. We consider this necessary because families first learning about HD find it difficult to absorb all medical facts and their implications and because some family doctors have little experience of the illness so cannot discuss it fully. In addition,the initial shock of knowing about HD may prevent understanding and the formulation of questions by family members. Chapters 1 and 2 explain the medical and hereditary facts.

Secondly,we believe that more than facts alone need to be considered. It is important for families to understand how the presence of HD is of concern to all members and how it affects their lives. Family members need to have some insight into the feelings of anguish, anger and often despair the illness will evoke. Such feelings need to be recognised; they are discussed in Chapters 3, 4 and 5 in a way which we hope family members will find helpful.

Thirdly, as well as medical facts and the emotional response to these, practical considerations for both medical and emotional problems are essential. For example, what safeguards do those at risk need to consider? How and when should employers be told of the nature of the illness? Is there a 'right' way to tell young people of the presence of HD in the family? How can those caring for sufferers be helped with their burden?

Since each family is unique and since HD shows itself in a variety of ways, some of the medical symptoms, social implications and practical problems now described will be true for some though not all families, and not every experience mentioned in this guide will come to all. It may be found that some questions have still not been answered, so we have mentioned further sources of help and information; these are listed at the back of the booklet.

Finally, this guide is intended to help people meet difficulties and overcome problems. In spite of all these, we know families who face HD with great courage and cheerfulness, building on the strengths of the person with HD, exploring together new ways of living and taking each day as it comes. We hope that the following chapters may be encouraging, informative and helpful. ...

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