"Long before it's in the papers"
January 28, 2015


Forgotten but not gone: leprosy lives on in America

Nov. 9, 2008
Courtesy American Society of 
Tropical Medicine and Hygiene
and World Science staff

Long seen as a dis­ease of bib­li­cal times, lep­ro­sy still ap­pears and may be spread­ing in the Un­ited States, re­search­ers say. But it’s often mis­diag­nosed, they warn, with dis­as­trous re­sults.

Al­so known as Hansen’s dis­ease, lep­ro­sy is a slow, chron­ic ill­ness that of­ten leads to dis­abil­ity and dis­fig­ure­ment by at­tack­ing the per­iph­er­al nerv­ous sys­tem and by de­grad­ing mo­tor skills. Sci­en­tists don’t clearly un­der­stand how it’s trans­mit­ted.

Father Damien, a Catholic priest who know­ingly ex­posed him­self to le­prosy and suc­cumbed to it in 1889 after years of help­ing lep­rosy pa­tients in Ha­waii.

“We be­lieve there are more cases of lep­ro­sy not iden­ti­fied due to the lack of aware­ness about the dis­ease among phys­i­cians in the U.S.,” said James Kra­hen­buhl, di­rec­tor of the Health Re­sources Serv­ice Ad­min­istra­t­ion’s Na­tional Hansen’s Dis­ease Pro­gram in Ba­ton Rouge, La.

This leads to “mis­di­ag­no­sis and wrong treat­ments,” he added. About 150 lep­ro­sy cases are di­ag­nosed year­ly; 3,000 peo­ple in the Uni­ted States are be­ing treated, he said.

Lep­ro­sy, whose pa­tients have his­tor­ic­ally been qua­r­an­tined in iso­lat­ed “lep­er col­o­nies” through­out many coun­tries and time per­i­ods, is caused by a rod-shaped bac­te­ri­um, My­co­bac­te­ri­um lep­rae

In­fec­tion and symp­toms can take three to 10 years to set in, mak­ing it hard for re­search­ers to pin­point where or how peo­ple catch the ill­ness, ac­cord­ing to the Hansen’s Dis­ease pro­gram.

Pa­tients gradually lose feel­ing in their fin­gers and toes, leav­ing them open to re­peat­ed burns and cuts which get in­fected. The re­peat­ed dam­age leads to bone ab­sorp­tion and mo­tor nerve de­te­riora­t­ion caus­ing fin­gers to short­en and curve, re­sult­ing in a claw-like ap­pear­ance. 

Lep­ro­sy is fully treat­able with med­i­cine in early stages. But nerve dam­age that oc­curs in lat­er stages can’t be re­versed.

Be­cause many U.S. lep­ro­sy pa­tients are poor im­mi­grants who turn to free clin­ics or emer­gen­cy rooms, many of the doc­tors in­volved aren’t fa­mil­iar with the dis­ease, ac­cord­ing to the pro­gram. They of­ten mis­take the skin le­sions for a fun­gus or ring­worm and pre­scribe a top­i­cal cream. Be­cause lep­ro­sy pro­gresses slow­ly, it can take months or long­er be­fore it be­comes clear the treat­ment is fail­ing—giv­ing the dis­ease a size­a­ble head start.

Lep­ro­sy pre­vails most in the trop­ics and poor coun­tries. Due to changes in im­mi­grant re­loca­t­ion, lep­ro­sy is now be­ing di­ag­nosed through­out the Un­ited States, Kra­hen­buhl said. The pro­gram sees about 30 cases each year among res­i­dents in south­ern Lou­i­si­ana and the Gulf Coast of Tex­as who were born in the U.S. and who have nev­er vis­ited an en­dem­ic coun­try.

“As we see lep­ro­sy move to­ward in­ter­nal re­gions of the States, it be­comes more ur­gent to reach those physi­cians to let them know about the symp­toms of this dis­ease,” said Kra­hen­buhl. To raise aware­ness among physi­cians, he plans to lead a sym­po­si­um on the top­ic at the Amer­i­can So­ci­e­ty of Trop­i­cal Med­i­cine and Hy­giene meet­ing Dec. 7 to 11 in New Orleans.

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Long seen as a disease of biblical times, leprosy continues to appear in the United States, researchers say. Also known as Hansen’s disease, leprosy is a slow, chronic illness that often leads to disability and disfigurement by attacking the peripheral nervous system and by degrading motor skills. Scientists don’t clearly understand how it’s transmitted. “We believe there are more cases of leprosy not identified due to the lack of awareness about the disease among physicians in the U.S.,” said James Krahenbuhl, director of the Health Resources Service Administration’s National Hansen’s Disease Program in Baton Rouge, La. This leads to “misdiagnosis and wrong treatments,” he added. About 150 leprosy cases are diagnosed yearly; 3,000 people in the U.S. are being treated for leprosy, he said. Leprosy, whose patients have historically been quarantined in isolated “leper colonies” throughout many countries and time periods, is caused by a rod-shaped bacterium, Mycobacterium leprae. The onset of infection and symptoms can take three to 10 years, making it difficult for researchers to pinpoint where or how people acquire the disease, according to Hansen’s Disease program. As leprosy progresses, patients lose their sense of touch in fingers and toes, leaving them open to repeated burns and cuts which get infected. The repeated damage leads to bone absorption and motor nerve deterioration causing fingers to shorten and curve, resulting in a claw-like appearance. Leprosy is fully treatable with medicine in early stages. But nerve damage that occurs in later stages can’t be reversed. Because many U.S. leprosy patients are poor immigrants who seek treatment in free clinics or emergency rooms, the program said many of the doctors involved aren’t familiar with the disease. They often mistake the skin lesions for a fungus or ringworm and prescribe a topical cream. Because leprosy progresses slowly, it can take months or longer before it becomes clear the treatment is failing—giving the disease a sizeable head start. Leprosy prevails most in the tropics and poor countries. Due to changes in immigrant relocation, leprosy is now being diagnosed throughout the United States, Krahenbuhl said. The program sees about 30 cases each year among residents in southern Louisiana and the Gulf Coast of Texas who were born in the U.S. and who have never visited an endemic country. “As we see leprosy move toward internal regions of the States, it becomes more urgent to reach those physicians to let them know about the symptoms of this disease,” said Krahenbuhl, who plans to lead a symposium at the American Society of Tropical Medicine and Hygiene meeting to raise awareness among physicians.