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Faces of Huntington'sReview - Faces of Huntington's
by Carmen Leal-Pock
Essence Publishing, 1998
Review by Christian Perring, Ph.D.
Dec 20th 2002 (Volume 6, Issue 51)

Huntington's Disease (HD) is a relatively rare genetic disorder: maybe as many as 40,000 Americans have this severe progressive neurological disorder.  But it is notable for several reasons.  First, it is a particularly awful disease: the average onset age is 36, and it generally takes 20 years until the person with the disease dies.  It affects the person both physically and mentally.  Second, it is passed on from a parent to a child with 50% probability.  Normally, if one's parent has HD, then one has a one-in-two chance of also having HD.  People who knew that the disease was in their family often used to have to live in fear that they would also start developing symptoms.  There is currently no cure and treatments have limited success in reducing the symptoms.  In 1994, a genetic test became available that could tell people with a great deal accuracy whether they had inherited the genetic abnormality.  Now, people who know they are at some risk for the disease have to decide whether they want to know if they carry the genes for the disease, and this itself is a extremely difficult decision for many.  There's also a troubling question whether it is right for people with the genes for HD to have children knowing that their children would have a 50% of inheriting those genes.  Third, HD presents many hard choices for family members caring for their relatives with the disease, since people with HD need a great deal of attention, and in early stages can lose their inhibitions and so behave in socially unacceptable ways.  There's no doubt that living with a family member who has HD can emotionally draining and upsetting.  So the issues faced by people with HD (pHDs!) are often quite similar to those faced by people with other neurological disorders and severe mental illnesses.  As we come to understand the genetic basis of many of these diseases, families at risk for them will face other issues currently faced by families at risk for HD. 

Faces of Huntington's is a collection of short reflections and some poems by people with families at risk for HD or who care for people with the disease.  These pieces are divided into different groups, such as "faces of encouragement," "faces of love," "faces of family," "faces of heroes," "faces of faith," "faces of forgiveness," and "faces of hope."  One admirable feature of this collection is that it does not simply represent HD as a tragedy or an affliction, even though the contributors are all very clear about the pain that HD can cause.  The authors write from their own personal experience, telling their stories, recounting what happened to them, how they coped, and what they learned.  The stories particularly focus on how their experience relates to their religious faith, and they all write from a Christian perspective, which is not surprising since the Canadian publisher, Essence, is "dedicated to furthering the work of Christ through the written word."  So the book may be of limited interest to non-Christian readers.  It should also be noted that most of the contributors are not professional authors, and their writing has a somewhat homespun feel to it.  At over 350 pages, some readers may find it hard to read the book from beginning to end, and could find it more rewarding to dip into the book at different points. 

Nevertheless, people's personal narratives can convey a sense of their lived experience that is not captured by lists of symptoms or statistics about people with HD and their families.   Faces of Huntington's will be a valuable resource to people with HD in their family.  But it will also be valuable to health care professionals who interact with these families and to medical ethicists and policy-makers who would benefit from a more complete picture of what it is like to live with HD in one's family. 

 

© 2002 Christian Perring. All rights reserved.

Christian Perring, Ph.D., is Chair of the Philosophy Department at Dowling College, Long Island. He is editor of Metapsychology Online Review. His main research is on philosophical issues in psychiatry. He is especially interested in exploring how philosophers can play a greater role in public life, and he is keen to help foster communication between philosophers, mental health professionals, and the general public.

 

 

 

Links:

·                      Huntington's Disease Society of America

·                      Your Genes Your Health pages on HD

·                      Piece by Carmen Leal-Pock reprinted from Faces of Huntington's.

·                      Review of Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases


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