Customer Reviews

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

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Read through the media, and you'll find all sorts of opinions about what diseases deserve more research dollars. Sadly, I can't recall any major media pieces in recent years stressing the need for more focus on Huntington's disease. While it may be a rare condition, there is no illness I can think of that creates more dread in those at risk for developing it and creates more havoc on those who do develop it. Significantly more resources and compassion are needed to fight this illness.

The quick facts:

1) A child born to a parent with Huntington's disease has a 50% chance of developing the illness later in life (if the child inherits a mutant form of the Huntington's gene from his/her parent, he/she has approximately 100% odds of developing the disease later in life).
2) Symptoms of Huntington's disease often develop around age 30 or later--after one has already had children--and late enough in life so that the children can see what happens to their affected parent.
3) Huntington's disease causes an progressive, unrelenting movement disorder (chorea) with progressive mental decline and death.
4) In the past (and no doubt today, too), patients with Huntington's disease and their blood relatives have been stigmitized and ostracized. Within the past century, attempts (some successful) have been made to sterilize patients and prevent them from marrying (in Germany and the US).
5) The disease may be so stigmitizing and physically destructive that children of Huntington's patients who start to develop symptoms are at risk for suicide. In fact, this book is based upon the story of a woman who develops symptoms and literally walks into the sea to end her life.

This book contains an interesting compilation of stories of the doctors who characterized the disease in the United States of America. A few highlights of the book:

The disease had been characterized by others well before George Huntington's major publication in 1872. However, Huntington meticulously demonstrated the autosomal dominant pattern of the disease--with about complete penetrance. At that time in history, perhaps only one form of blindness had been shown to have a similar strict, heritable pattern, but Huntington was unaware of that. Huntington also published his article only a few years after the Austrian Monk Mendel published his study on the heritable traits of peas--but Huntington was unaware of that paper too.

Huntington's disease also goes by the name St. Vitus's dance and "the Magrums." I have no idea where the name "Magrums" comes from--maybe I should reread the book. However, St. Vitus is a patron saint of dancers. Apparantly, epileptic and chorea patients used to pray to St. Vitus to try and cure their diseases.

Doctors used to try and treat Huntington's disease with herbs, medicines such as opium & digitalis, and a healthy diet.

William Osler was very interested in Huntington's disease, and admired Huntington's 1872 paper greatly. He even wrote to Huntington to try and arrange a trip to East Hampton to observe patients. He was initially rebuffed because the patients in East Hampton were extremely sensitive about their illness and didn't want to be observed.

Huntington's patients became a target of the eugenics movement in the 20th century.

This book is a rare glimpse into the history of a genetic disesase that has been moving to the front and center of genetic research ever since the gene for Huntington's disease was discovered in the early 1990's. This is a dense book, yet I was amazed at the speed with which I read it. Writers and editors must have worked hard to get this distillation of material that enlightens and informs in a way that keeps the reader absorbed and fascinated. I am from an HD family but I think if I were an MD interested in research, or an MD with a highly creative mind or simply a person with a curiosity about genetics as it unfolds in the context of community, this is a stimulating and exciting read.

I expected to be interested, but am astounded, really, at what this book reveals about disease and community. Thank you Alice Wexler and to all those who supported you in this effort. I wish the whole medical community would read your book!

Nancy Hess
Hummelstown, Pennsylvania

This is good book for people with an interest in chorea. The book has some excellent information and fasinating history. However, it does seem like it has been expanded beyond the information the authors have. For example, the story of the women and the sea is told 4-5 times and get repetitive.

This book is well written and gives a true insight to Huntington's. This is a book to read even if you are not affected by this illness.