Religious sisters’ pioneer work at Carville continues with cutting-edge research, care

One hundred and thirty years ago, the first seven leprosy patients transported by river barge from New Orleans arrived at Indian Camp Plantation in Carville, La. Outraged by an exposé article in the Times Picayune about local leprosy treatment houses, the people of New Orleans demanded that the “pest houses” be moved outside the city limits. In 1892 the state legislature enacted Act 85, which decreed that anyone with leprosy, or Hansen’s disease, should be quarantined to a certain location.  

The Indian Camp Plantation property had been leased in anticipation of finding a new location near New Orleans. Once again, public outcry from New Orleans area residents prevented the Louisiana Leprosy Home from relocating, and the Carville location became the site of the only national leprosarium until 2005. 

People with leprosy from all over came to Carville, located at the end of the Mississippi River Road. For patients this was the literal and figurative end of the road because they were often abandoned by their families and society, which thought their disease was a curse from God. 

It was from these dark settings that a light emerged when the Daughters of Charity of St. Vincent de Paul arrived in 1896 to staff the leprosy home. A colorful history of the treatment of the disease and social life of the community continued there until the Daughters of Charity ended their mission in 2005 as patients’ laboratory services were moved to Baton Rouge. The sisters’ pioneer research continues today at the National Hansen’s Disease Program (NHDP) Clinical Center in Baton Rouge, a national hub for Hansen's disease research and treatment.  

On World Leprosy Day January 26, the NHDP, located in a state-of-the art facility, highlighted the advancements in research and dedication to the overall treatment of Hansen’s patients.  

Among the NHDP initiatives is providing cutting-edge research and comprehensive care for Hansen’s Disease, including medical treatment, rehabilitation services, and psychological support. It’s integrated health, care, noted Betsy Wilks, clinical branch chief. 

“There is a care team overseeing the overall wellbeing of the patients, including a physician, nurse, occupational therapist, pharmacist and social worker,” Wilks said. 

The NHDP helps patients prevent further harm to their bodies, primarily their hands and feet, which can happen when leprosy-caused nerve damage eliminates their ability to feel pain signals from extreme heat, cold, and pressure. 

TOP RIGHT PHOTO: The Daughters of Charity of St. Vincent de Paul carried out research that has led to breakthroughs in treatment of Hansen’s disease. Photos provided by the National Hansen’s Disease Museum in Carville
Above Photo: The Hanen’s Museum contains many artifacts and detailed stories of the Carville leprosarium.
 

Scott Figarola, occupational therapist said, “Part of my job is to help get them up and running again.” 

Shoes are modified with specialized insoles to help prevent refractory plantar ulcers. Grip aids help patients from doing further damage to their hands. 

Figarola emphasized that early detection of leprosy helps such damage from advancing to the point that amputation is necessary. 

There’s also continued research and development on the disease, according to Dr. Linda Adams, chief of the laboratory research branch of NHDP. 

The staff emphasized that Hansen's disease is not highly contagious, and 95 percent of the human population has a natural immunity to it. It responds well to treatment and, if diagnosed and treated early, does not cause disability. 

“Hansen’s disease can be treated with antibiotics,” said Scott McGrew, NHDP public health outreach coordinator. 

People with leprosy in the U.S. can receive Hansen’s disease medications at no cost through their own doctor or through the NHDP ambulatory care clinic closest to them. Most cases of Hansen’s disease respond to treatment and become non-infectious within a very short time. 

The National Hansen’s Disease Program in Baton Rouge strives to get the patients “up and running” and living normal lives as soon as possible. This includes modifications to shoes, foot support devices, and grip aids for hands that helps Hansen’s patients avoid the impact of harming their limbs as a result of nerve damage. Photos by Debbie Shelley | The Catholic Commentator

Above all, the NHDP works to reduce the misconceptions and stigma about leprosy and to promote inclusivity, according to McGrew. 

The employees stressed that the foundation of excellent care they provide Hansen’s patients is built upon the courageous sacrifices and research done by the Daughters of Charity at Carville. 

“The Daughters of Charity assigned to Carville came here to do a job that no one else wanted to do – provide care for leprosy patients,” said Elizabeth Schexnyder, curator of the Carville Hansen’s Disease Museum, which contains medical and cultural artifacts that tell the early history of the leprosarium. “It was an era when the stigma of leprosy was much greater than it is today, and when patients with the disease were greatly feared because of the unknown risk of contracting the disease. The stigma was such that an assignment to Carville was the only one that the sisters were allowed to turn down. Not one did.” 

Because the disease could not be successfully treated until the 1940s, many patients suffered serious deformities of the face and extremities, noted Schexnyder. 

“Nonetheless, in 1896, the first four sisters came and provided the patients not just with the available medical care, but with the compassion and understanding they needed to deal with their disease, in large doses,” Schexnyder said. 


Advanced research on leprosy continues today at NHDP.  

She added that over the years, multiple medical advances have changed things considerably.  Hansen’s disease is no longer as fearful as it was since it can be cured.   

“Sister Hilary Ross established the first research laboratory at the leprosarium and was widely published in the field,” Schexnyder said. “Without the sisters, who provided continuity in care and maintained the momentum by selflessly providing so many social as well as medical services in the interval, this all might not have happened as it did or at the same pace.  

“Hansen’s disease patients here and throughout the world and everyone who works with this disease owes them a debt of gratitude that can never truly be repaid.  But then, they never expected anything other than the satisfaction of a job well done.”