This fascinating book is a biography of the Wexler family, an insight into the personal struggle of being at-risk for Huntington's disease, and a history of Huntington's Disease research leading up to the discovery of the Huntington's gene in 1993. Alice skillfully weaves these three motifs together into one story which all fits together very well.
Alice and her sister, Nancy, are both at-risk for Huntington's Disease. Their mother, Leonore, was diagnosed with HD in 1968 and died in 1978. Their father, Milton, is the founder of the Hereditary Disease Foundation, which has sponsored workshops and provided funding for many scientists working on Huntington's Disease. Nancy was executive directory of the Congressional Commission for the Control of Huntington's Disease and Its Consequences, and was a leader in the research project at Lake Maracaibo in Venezuela, which led to the discovery of a marker near the Huntington's gene, and later to the gene itself.
I knew the names of Alice, Nancy, and Milton Wexler before reading this book, but now I feel like I know them personally. Alice makes her mother, father, and sister real people with feelings and struggles. She enables the reader to share her relationships with her family and to understand her struggles with being at-risk. The scientists, many of whose names I had also heard before, became real people, more than just authors of papers on Huntington's Disease.
The most amazing thing about this book is Alice's ability to explain technical details in a language that I, a non-scientist, can understand. She explains the genetic basis of Huntington's Disease and what an autosomal dominant inheritance pattern means. Her descriptions of the many research projects relating to Huntington's Disease are detailed and clear. I had heard of many of them, but this is the first time I actually understood what they were doing and why. Her explanation of the nondisclosing prenatal test is the simplest I have ever heard.
I could not put this book down. I enjoy mystery stories, and even though I knew they were going to find the HD gene, I could not wait to find out what happened. I highly recommend Mapping Fate for everyone who is affected in any way by Huntington's Disease. There are parts that may be a little hard for someone who is at-risk or pre-symptomatic to read because Alice vividly portrays her mother's deterioration. However, the hope that is generated by all of the research that has been done and is continuing to be done on HD, will leave every reader with a positive feeling.
I got this book from a library. If your library does not have it, they should be able to get it through inter-library loan. It is also available in paperback now (Berkeley : University of California Press, 1996, ISBN: 0520207416). Your bookstore should be able to order it if they don't have it in stock.
For more information on Alice Wexler and Mapping Fate see http://www.hdfoundation.org/alicew.htm
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Created: June 14, 1996
Last updated: Dec. 4, 2010