“Leprosy,” the doctor said. The patient from Nepal suspected the cause of his mysterious skin rash, but fear had silenced him. After several unsuccessful treatments and a skin biopsy, the illness was diagnosed, and the patient was referred for treatment.
Unlike the patient with treatment-resistant tuberculosis, however, this patient was not forced into isolation. Although leprosy is caused by the same family of bacteria as tuberculosis, it is not highly contagious. And it is treatable and curable with a combination of antibiotics.
For treatment of leprosy, also known as Hansen’s disease, patients can seek help at the National Hansen’s Disease Clinical Center in Baton Rouge, Louisiana, which provides both outpatient and inpatient care. Or they can turn to a private physician (900 physicians specialize in the disorder) or to one of the eleven ambulatory clinics found in Arizona, California, Florida, Illinois, Massachusetts, New York, Puerto Rico, and Texas. The outpatient treatment center in Massachusetts is located at the Lahey Clinic in Burlington.
Worldwide, says the World Health Organization (WHO), the countries accounting for most cases are located in south and southeast Asia, Africa, and parts of South America. They include Brazil, India, Madagascar, Mozambique, and Nepal.
In the United States approximately 7000 cases have been reported during the past 30 years. According to the National Hansen’s Disease Registry, the number of cases reported annually in recent years has remained relatively stable at between 150 and 200. In 2005, 30 states reported a total of 166 new cases, over half of them in California, Louisiana, Massachusetts, New York and Texas. Massachusetts reported nineteen. Other states with the highest incidence include Hawaii and Puerto Rico.
Since the disease occurs so rarely with the continental United States, primarily among immigrants and refugees, the public has limited knowledge about the condition. And medical schools fail to provide adequate training. Diagnosis, as a result, may be delayed, putting the infected person at greater risk for permanent damage and putting those with whom he has had close and prolonged contact, at greater risk for infection.
Contagion, however, is not a major concern. With modern antibiotics, monitoring, and good sanitation, leprosy poses little threat to most of the world’s population. More than 95% seem to have a natural immunity to the disease. And unlike tuberculosis, which spreads quickly by coughing and sneezing, transmission of leprosy requires close contact over an extended period of time, and its symptoms may take two to ten years or longer to emerge.
But guilt, shame, and stigma still surround the disease.
The leper colonies in Massachusetts and Hawaii are gone. Penikese Island Hospital, off the coast of Cape Cod, Massachusetts was abandoned in 1921 after operating for 16 years. And in 1969, abolishment of the isolation laws in Hawaii liberated the Kalaupapa settlement on the island of Molokai, which was the enforced home for about 10,000 lepers since 1865. Wiping out ignorance has been more difficult.
The International Association for Integration, Dignity, and Economic Advancement (IDEA) says in its Human Rights and Leprosy brochure: “The stigma associated with leprosy remains the most persistent and pervasive form of social injustice, prejudice and discrimination that society has forced upon its fellow human beings. Individuals whose lives have been challenged by leprosy have had their most basic human rights denied by virtually every major culture and religion throughout time.”
To combat this stigma, says WHO Goodwill Ambassador Yohei Sasakaw, we must create an environment in which leprosy-affected individuals can spread their message that “leprosy is just another disease, that it is completely curable, and that there is nothing wrong with those who have been cured.”
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Sally A. Connolly is a retired teacher and school counselor from Massachusetts. She is author of a book about her late husband, A BOY FROM LAWRENCE: The Collected Writings of Eugene F. Connolly (2006). More information can be found at www.freewebs.com/aboyfromlawrence.
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