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6.23.2017

Order of St. Lazarus Makes Gift to Leprosy Program

Hansen’s disease, or leprosy, as it is commonly known, is one of the oldest and most misunderstood diseases in recorded history. Thanks to the generosity of The Military and Hospitaller Order of St. Lazarus of Jerusalem, patients battling the illness can now receive financial help to help offset the expense of traveling for medical care.

The University of Miami/Jackson Memorial Hospital Hansen’s Disease Program is one of 11 federally funded programs in the United States. The program covers clinical services for patients with suspected and diagnosed leprosy infection, even for patients who live outside the Miami-Dade area. As the only program in the southeast, patients often have to travel a long way, which can be costly.

“We are delighted to be receiving this generous gift,” said Anne E. Burdick, M.D., M.P.H., the director of the Miller School’s Leprosy Program, located at the Jackson Memorial Ambulatory Center. “It will be used by many patients to help them pay for gasoline, bus fare, parking, or to stay overnight if they’ve come from a far distance.”

Leprosy is a chronic, progressive, bacterial infection that primarily affects the skin, peripheral nerves, and upper airway. Once thought to be untreatable, the illness is curable if caught early and treated aggressively with a combination of antibiotics.

Though common in many countries in tropical and subtropical climates, leprosy is relatively rare in the United States, with approximately 200 cases diagnosed annually, primarily in the south, California, Hawaii, and Guam.

“Leprosy still exists in the world, and it is often overlooked and forgotten,” said Luc Pierre Quinson, a Knight Commander of the Order of St. Lazarus, who traveled to UM recently to meet Burdick. “We think it is important to support research and clinical efforts, and in treating and educating the world in the true story of leprosy today.”

According to the World Health Organization, the first known written reference to leprosy is from 600 B.C. It was initially considered a curse or punishment from the gods because of its disfiguring side effects and no known treatment.

In 1873, Dr. Gerhard Henrik Armauer Hansen of Norway discovered leprosy was an infectious disease. For years after, however, patients continued to be ostracized by many societies and cared for only at missions by religious personnel.

Founded in 1098, the Order of St. Lazarus is an order of Christian chivalry, which is actively engaged in organ and tissue donation awareness and caring for those with Hansen’s disease, by creating awareness and support for projects that work toward those goals.

The Order has made two prior donations to UM, whose leprosy program was created in 1983, and sees an estimated 50-70 active patients each year, offering screenings, diagnosis, treatment, and consultation.

Patients also often need to see other specialists due to the side effects of the illness, including nerve and eye damage.

Though Burdick saw an increase in the number of newly diagnosed cases — 15 cases last year alone — she says the overall risk of getting Hansen’s disease is low because more than 95 percent of people have a natural immunity to the disease.

“It’s a very curious disease,” said Burdick, who is also a professor of dermatology, and associate dean for TeleHealth and Clinical Outreach. “There is a very long incubation period, and very often it is misdiagnosed for many years because it is one of the great masqueraders. Leprosy can look like many things so we often have patients come in from other doctors and they are not quite sure what it is.”

Though the disease is now treatable, the stigma long associated with it still exists in most of the world, and the psychological and social effects may be harder to deal with than the actual physical illness.

“Our patients are often scared when they come in,” said Lourdes Barquin, RN, the leprosy program coordinator. “The clinic helps to put them at ease, answers their questions and concerns, and provides educational tips, so this grant will be a big help for them.”

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