The Woman Who Walked Into the Sea: Huntington's and the Making of a Genetic Disease

by Alice Wexler

When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington’s chorea, and today it is known as Huntington's disease. This book is the first history of Huntington’s in America.

 

Starting with the life of Phebe Hedges, Alice Wexler uses Huntington’s as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to �belong to the disease”; the emergence of Huntington’s chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.

 

Genres: Nonfiction, History, Science, Medical, Medicine

288 pages, Hardcover

First published September 22, 2007

About the author

Alice Wexler received a Ph.D. in history from Indiana University in 1972. She has taught at UC Riverside, the California Institute of Technology, Claremont Graduate School, Occidental College and UCLA. She has been a Research Scholar at UCLA's Center for the Study of Women since 1994.

Reviews

[Dean · Rating 5 out of 5]

My best friend is in the later stages of HD. I've known him since he was in his late twenties and had no symptoms. He's married and has two daughters who are at risk.
I read as much as I possibly can on this disease in order to understand as much as possible about it without having a medical degree. This book has helped me in exactly that way. The family histories(While some people commenting found them to be boring.)were key to understanding how we've grown as a society, both in medicine and in the general public with regards to our perceptions of people and families with HD. I found this book to be helpful, well researched and informative.

[Allyson Dyar · Rating 4 out of 5]

I’m at the time of my life where I read books that I think that I’ll enjoy versus the time in college where I had to read books there is no earthly way I’d even consider casting my eyes over. Armed with fantastic reviews fueling great anticipation, I dove into Alice Wexler’s The Woman Who Walked Into the Sea. While I found it a decent read and a book I felt compelled to finish reading, my impression once I’d finished reading it was, “Meh.”

And that surprised me. I mean, when it comes to Huntington ’s disease, the Wexler family is first and foremost. The Hereditary Disease Foundation was started by Alice’s father Dr. Milton Wexler after he discovered that his wife, Alice’s mother, had inherited and subsequently died from the disease. Alice’s sister Nancy is best known for her discovery of the location of the Huntington’s gene. When it comes to any discourse on Huntington’s Disease, the Wexlers are usually central to any discussion.

Back to the book. After my reaction to this book bubbled to the surface, I decided I should examine why I felt this way. I guess it comes from the fact that the book was touted in the medical history community as the book on Huntington’s Disease (or Huntington’s Chorea, which is the term I grew up with). This book is a history of the disease but not necessarily with a purely medical history angle. After all, Alice Wexler is a PhD in history, so her focus would not necessarily be with the medical aspects as much as the disease’s place in history as well as its effect on the families.

The beginning of The Woman Who Walked Into the Sea examines the woman in the title and generations of her family prior and after her. Because the disease is an autosomal dominate disease, each parent has a 50/50 chance of passing it on to their offspring. And because the disease doesn’t manifest itself until the afflicted person is in middle age, it is likely that s/he has already had children, thus continuing the disease cycle.

Because Dr. Wexler is such a compelling author, I found what would normally be dry genealogical information to be strangely fascinating as she followed the beginnings of the disease on Long Island seen and documented by Dr. George Huntington until almost present time. She also takes time to give a complete picture of Dr. George Huntington and his family.

As immigrants came to America’s shores in the twentieth century, the ugly swirl of Eugenics followed as Americans decided that those who didn’t fit the standards of health and intellect should be kept out the United States or be sterilized. The author deftly places Huntington’s disease role in the Eugenics debate; anyone who is interested in Eugenics should definitely want to read that section of the book if not the entire tome.

Please don’t let me discourage you from reading this book if it sounds like your cup of tea. It is very well written and the subject matter is interesting as well. It’s just that in comparisons to other medical history books, this isn’t one that I’d necessarily re-read.

I usually end my book reviews of e-books with an actual review of the e-book format itself. Yale University Press did an excellent job with the e-book and I don’t recall any cussing or balling of my fists in anger as I’ve done with other books. Well done!

I give this book a solid 4.5/5 Stars

[Trish · Rating 4 out of 5]

Very interesting to get the history of Huntington's disease and background behind why George Huntington came to see a connection between the symptoms from observing those in his home town/his father's practice.

I knocked off a star as it took me a while to get into it as there is so much to digest. To be fair though... Perhaps I found it hard to read initially where my personal involvement with Huntington's was making it overwhelming at times. I needed to take a breather as it was so emotionally draining, feeling the sorrow for those who were treated in previous generations. No one knew any better but I felt for people I had never met, knowing how hard it is to cope with HD even in this day and age.

I went away from the book for a little while then came back to it with a revived interest and was able to finish it. I'm very glad I gave it another go and was able to be enlightened as the story does need to be read.

[Amy · Rating 3 out of 5]

At first, I was intimidated by the prospect of reading a medical book, but Wexler does a fine job of detailing a sociological history of Huntington's Disease without being bogged down in medical jargon. This book gave me some excellent insight to the disease that has haunted my family for generations.

[Pancha]

This book focuses on Huntington's Disease in the Eastern US, with forays into historical accounts of the disease from antiquity etc. It also focuses on the social effects the disease had on families broadly from the 1790s to the current day, with special attention paid to the effect of the eugenics movement.

[Daniel · Rating 3 out of 5]

Although I got bogged down early in the perhaps overly detailed genealogy of some of the early American families with Huntington's disease, I'm glad I stuck with it. I can recommend it to those interested in the histories of neurology, psychiatry, and human genetics (including the eugenics movement) in 19th and 20th century America.

[Barb Gant · Rating 5 out of 5]

Wonderful book about the rise and spread of Huntington's disease. How people came to recognize it as a genetic disorder after passing it off for generations, watching family members suffer with what they called St. Vitus Dance.

[Emily Brown · Rating 2 out of 5]

interesting at first, then too detailed on the families of new england. didn't finish.

[Margaret · Rating 4 out of 5]

Wonderfully written, exposing the sad reality of those unfortunate families who are living with - and who are at risk for developing - HD.

[Jonah · Rating 3 out of 5]

This book wasn't quite what I wanted it to be- I think the book I wanted may be the author's first book on Huntington's, which she hints was more autobiographical.
It was still reasonably interesting, and it made me re-examine my belief that people with Huntington's shouldn't have kids.
It was interesting to me that the author cites feminism as an inspiration in the writing of the book; it was sometimes jarring that masculinity is cited as a character aspiration in a fairly neutral way and "male" is inserted in places.

[Serena · Rating 4 out of 5]

Essentially this book is a social and historical look at Huntington's disease, primarily in the US. The focus narrows even more on Dr Huntington and the family in his community that had St Vitus dance/megrums/hereditry chorea. It talks about the confluence about ideas of hereditry, neurology, and the practice of community medicine. A later chapter on eugenics reminds how an understanding of genetics can be used for ugly purposes.

[Kym · Rating 5 out of 5]

What a surprise to find out that Huntington's Disease brutally ravaged my ancestors, but my little branch of the massive tree remained free from it. My ancestors are well documented in this book, and the woman who walked into the sea was an aunt.

[Renee · Rating 5 out of 5]

This is really fascinating.

[Beth]

ILL submitted 5/27/15

[P.D.R. Lindsay]

Interesting if a bit distressing.