I knew nothing about this terrible period in America history but found the subject very well researched and will now search out more on the subject.

This is a fascinating book about the history of leprosy in the United States. So much of the information out there in public opinion on leprosy is inaccurate and this book sets it straight. It gives insight into the lives of those affected by leprosy and how, before modern medicines, many lived at institutions for the rest of their lives. I felt the title was a bit confusing as the institution described in the book was near the town of Carville but otherwise, Carville was barely mentioned. A title more directly connected to leprosy or institutionalized medicine would have been more compelling and accurate.

Excellent account of the leprosarium at Carville, LA. I had no idea that this facility existed or the traumatic lives of the people (even extremely young children) banished there upon their diagnosis of Hansen's disease (formerly known as leprosy). How terrible for these patients to feel the need to change their names so their families wouldn't be "shamed" for having a "leper" (a derogatory term) in the family!

Why do we conjure up images of TB, or Consumption, that are romantic -- think of Mimi or Violetta or any number of operatic and literary figures -- and yet when we think of the much less contagious Hansen's Disease, or Leprosy, we are revulsed? Using her journalistic reporting and story telling skills, Pam Fessler tackles this question by focusing on Carville and its predecessor institution, both designed to separate patients from the public, and their loved ones, for the rest of their lives. Fessler was inspired to write this fascinating book when she learned that her husband's grandfather, who contracted the disease during military service in the Philippines very early in the 20th century, had suffered not only from the illness but from being separated from his loved ones and virtually imprisoned in the facility, which was located in an isolated rural area in hot and humid Louisiana. Operated by the federal government, Carville was home to the many patients who lived their lives in squalid conditions and with no hope. Removal from "normal" life to Carville was not voluntary and life there was hard on both body and soul, as we learn from the stories of individuals who spent much of their lives there. Through her study of Carville, Fessler takes us on a chronologically-based journey into the history of Hansen's Disease, the United States' approach to dealing with it, the struggle for dignity, public understanding, and, eventually, a cure. Although the disease's origins and contagiousness still are not totally understood, the dedicated work of a small group of researchers has yielded a cocktail of drugs that eliminate or reduce its effects. Fessler offers us a thoroughly researched and spell-binding story and provides yet another step towards greater awareness and understanding of the nature of this age-old disease.

Read if you: Want a moving and fascinating medical history read.

I grew up in Louisiana and vaguely heard about the Carville residential hospital, but never knew the full history until now. It was shocking to read how people with Hansen's Disease have been feared, ostracized, and stripped of their rights. Most of Carville's residents did not want to be there (and escaped or tried to escape), but they also formed an extraordinary society. They created a newspaper, advocated for their rights, celebrated Mardi Gras, and courted each other. Fessler also draws apt comparisons between the way people with Hansen's DIsease were treated (and are treated--she recounts several instances of modern day discrimination and ignorance toward Hansen's Disease in the US and other places) and the way people with AIDS were treated at the height of the AIDS pandemic. The author's grandfather-in-law was a Carville resident, and recounts her husband's journey to find out more about his grandfather (the last paragraphs of the book made me cry at 6:00 AM this morning, when I was finishing the book before heading to work.). Definitely one of the best books I've read this year.

Librarians/booksellers: Even readers who don't normally read medical history will be drawn to it.

Many thanks to W.W. Norton & Company and NetGalley for a digital review copy in exchange for an honest review.

I love this book. It seems a bit odd to read about a disease during a pandemic but I found the book in-depth and it pulled me into the story of the Carville facility and it’s long history in America.