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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
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.
Huntington's Disease Society of America
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