In A Disease Apart, Tony Gould describes the history of leprosy, also known as Hansen's disease, over the past 200 years, with a focus on the devastating effects of the disease, the often inhumane conditions in which people infected with Mycobacterium leprae were forced to live, and selected missionaries, physicians and especially patients themselves whose efforts led to improved care and living conditions for people afflicted with leprosy worldwide.

Leprosy has been a feared illness since antiquity, due to the havoc it wreaks upon the body. Unlike infections or illnesses that ravage internal organs, such as its closely related cousin tuberculosis, which is caused by Mycobacterium tuberculosis, leprosy preferentially infects cooler parts of the body, particularly as the fingers, toes, eyes, nose and testes. The immune system's response to the infection often leads to an intense inflammatory response, which causes severe damage to the superficial nerves in these areas, leading to peripheral neuropathy. As a result, the afflicted person progressively loses sensation in these areas, which ultimately leads to tissue breakdown, ulceration and bacterial superinfection, followed by the loss of fingers and toes, destruction of the structure of the nose, and, in some cases, blindness.

Leprosy remains the most common infection that leads to disability, and its elimination has proven to be difficult, with nearly 250,000 new cases worldwide annually, including approximately 100 new cases in the United States each year. The prevalence (total number of cases) has declined dramatically, due to the introduction of the antibiotic dapsone in the 1940s, widespread distribution of the BCG vaccine for tuberculosis (which also provides protection against Mycobacterium leprae), free distribution of multidrug therapy to all newly diagnosed patients worldwide, and improved recognition and diagnostic techniques. However, in recent years, the incidence (the number of new cases) has not changed significantly. Leprosy is a disease of poverty, and 90% of cases occur in the poorest regions of Brazil, Madagascar, Mozambique, Tanzania and Nepal, which suffer from poor health care and access to medical resources. One to two million people are permanently disabled by the disease, many of whom continue to suffer from ostracism and inadequate care.

In the pre-antibiotic era, the most successful technique to prevent the spread of leprosy was compulsory segregation of those afflicted with the disease. Due largely to the fear of transmission of the disease to healthy individuals, people infected with leprosy were treated as badly if not worse than criminals: they were housed in the most decrepit settlements, which were often ringed with walls and barbed wires, with no protection from the elements, inadequate food and water, and little if any medical care. Those who sought to leave the leprosariums were hunted down like escaped convicts, and forcibly returned. In some extreme cases, the afflicted were gathered under false pretenses, and shot or burned alive en masse.

Gould thoroughly though repetitively describes the barbarous treatment that people infected with leprosy received in countries throughout the world, which differed little from one country to the next, particularly in the 19th and early 20th centuries. The strongest sections of the book are those in which he recounts the lives of those who sacrificed and dedicated their lives to the improvement of leprosy sufferers, particularly Father Damien, a Roman Catholic priest from Belgium who ministered to the colony of lepers in Molokai, Hawai'i before succumbing to the illness himself; John Ruskin Early, a leprous 'religious fanatic, a bigot, and exhibitionist' who tormented public health and government officials with his 'psychotic' behavior, but who also was instrumental in the creation of the national hospital for leprosy victims in Carville, Louisiana; and Stanley Stein, a long term resident at Carville, whose newspaper and frequent articles about the conditions there led to greater public awareness and government support for the disease and its sufferers.

A Disease Apart is a valuable addition to the history of medicine, which describes past and present challenges to the care of those afflicted with leprosy. Although written for the lay public it would be of most interest to those who have a strong interest in the disease or the individuals who were most influential in the advances made in its treatment. ( )

Informative but a bit of a slog. ( )