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The National Hansen’s Disease Museum

A former plantation turned medical prison that set the scene for a “miracle”.

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Along the River Road, linking Antebellum homes in South Louisiana, sits an outlier— a plantation that served as a medical prison for people with leprosy. Locals referred to the leprosarium as Carville, named after the neighboring town. The former  “Gillis W. Long Hansen’s Disease Center,” holds a fascinating chapter in Louisiana’s history as ground zero in the fight to cure a disease known as the biblical scourge. A museum on-site tells the story of hundreds of patients quarantined at Carville and the medical breakthrough that freed them from forced exile.

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The National Hansen’s Disease Museum is a federal museum in the property’s old cafeteria building. In 2024, it underwent an extensive renovation. It reopened with new exhibits, taking a deeper dive into the history of leprosy, the patients confined there, and the compassionate nuns, hospital staff, and doctors who cared for them.

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Elizabeth Schexnyder is the museum curator and a Carville historian. The story of how Louisiana operated the nation’s only leprosarium began in New Orleans when a medical board wanted to find housing and treatment for the city’s lepers.

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A member of The New Orleans Board of Control, Dr. Isadore Dyer, owned the property next door and knew it was for rent. He intended to establish a temporary leper home at Carville until a leprosarium could be built in New Orleans.

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The first patients arrived in 1894 to live at the abandoned home that locals referred to as Indian Camp Plantation. The first patients lived in the slave quarters left behind from the property’s pre-Civil War days as a plantation. They had to fend for themselves for the first year and a half. A doctor would visit once a week but no doctor wanted to live on site and provide full time care.”

In 1896, four sisters from the Daughters of Charity of St. Vincent De Paul arrived and the order remained on site, caring for patients until 2005. 

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The Sisters arrived to Carville with basic nursing skills and many advanced their training to become medical professionals such as pharmacists and medical researchers  “Sister Hilary Ross, in the 1920s, established a world-renowned research laboratory at Carville. The sisters did everything from housekeeping to cooking to running laboratories.”

The museum has a list of the 116 sisters who served at Carville over a period of 109 years. 

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Local folks called Carville “the leper home,”  a place to be feared and reviled.   “We have letters in our archives from local farmers complaining that patients were trespassing on their farms after hours and handling some of the produce. Farmers feared if patients touched their crops, they could contract leprosy. None of that is true, but the fear was real.”

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For much of Carville’s history, patients and their families suffered a social stigma dating back to Biblical times when lepers were depicted as unclean, unholy, and sinners.

“From the earliest days, our patients had to live here full time. Once they arrived, they had no idea of when their exit date was. In the early days, we had no treatment for leprosy, and it was thought to be highly contagious,” Elizabeth explains.

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A mock-up patient room is on display, and the original furniture issued by the government is for each patient. Patients lived in a dorm-like setting connected by covered hallways.

Patients diagnosed with leprosy by law were ordered to quarantine at Carville. The local sheriff would arrest and transport the patient if they failed to report to the hospital. 

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We pause to look at a Corinthian column once adorning the plantation home’s facade.  The 30-room mansion was built in 1859 and designed by the architect Henry Howard, who also designed the famous and much-photographed Nottoway Plantation across the river.

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The main house anchored what grew to become a 360-acre self-sustaining community.

Carville residents cultivated a thriving social and leisure life with clubs, including the B Natural Music Club and an annual Mardi Gras celebration, the largest social event of the year.

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“As drug treatment improved and patients were feeling better, they were encouraged to take part in so many different activities.”

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A Mardi Gras exhibit showcases photos and artifacts, including regalia from the king and queen and photos of floats and the Mardi Gras ball. “The parade went down our covered walkways, through eight-foot corridors lined by patients and staff. They ended up in the second-floor ballroom of the recreation building and had a huge party.”

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Sports also figured prominently in daily life. Carville has a championship softball team with the home team advantage because players were quarantined. Visiting teams from neighboring River Road towns would play at Carville.

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“I’ve met local people who, as children, watched the games from the fence or up on the levee since they couldn’t come on the property.” Carville also had a nine-hole golf course with golfers from nearby Gonzales and  Baton Rouge who played in some of Carville’s invitationals.

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Carville grew to become a 360-acre  self-sustaining community. It had to be because much of the outside world was fearful of contracting leprosy.  “We had our own water treatment center. We made our own electricity, we had our own cemetery. We even had a lake for recreation for boating and fishing.”

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Patients operated businesses that comprised “The Carville Mall,” a building dedicated to patient enterprises, including a barber shop, salon, photography store and electronic repair shop. Exhibits display their entrepreneurial spirit and ingenuity including the artistic use of Coca Cola bottles as garden decorations.

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“The Carville canteen sold cokes in bottles which were refundable if returned to the local distributor; however, the distributor wouldn’t accept returned Coke bottles from Carville patients for fear of contracting leprosy. The patients decided to repurpose the Coke bottles into gardens.”

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A star-shaped Coke bottle garden at the museum entrance is one example of a popular lawn decoration.

Carville imposed its own law and order, and those who broke the law went to jail. By law, you could be put in jail if you left the hospital grounds without a medical pass.

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A pair of shackles are on view, worn by a patient who was delivered to the gate by the sheriff. “There was a repeat rash of patients running away during Mardi Gras season, and they go to New Orleans and then come back and pay the consequences, which were 30 days in jail. “

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Carville also published an award-winning newspaper, The Star. Resident Stanley Stien was instrumental in growing The Star’s readership and attracting the attention of Hollywood celebrities, including Tallulah Banks.

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“I think in its heyday, The Star had over 80,000 subscriptions. It went around the world. Wow. It’s also the cornerstone of much of the research we do today. It’s all digital and online now.”

WheelchairHandcrank

We pause to look at a modified hand-cranked wheelchair. “Instead of putting your hands on the wheels to it forward, patients had hand cranks on bicycle chains. This helped prevent damage to the hands.”  Leprosy creates nerve damage causing a loss of sensitiy especially to the hands and feet. 

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“Leprosy creates nodules on the skin and peripheral nerve damage. The peripheral nerves give us mobility and sensation. Over time due to injury, patients would have clawed hands and lose toes and fingers.”

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The U.S. Public Health Service took operational control of the hospital in 1921. The nuns remained, caring for patients as nurses, researchers, pharmacists and other medical professionals with doctors and staff. Exhibits chronicle advancements in research and treatment of the disease which causes nerve damage, especially to the hands and feet. 

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“We became the world leaders in preventing amputation due to lower extremity insensitivity. After we started a foot program, it was established by Dr. Paul Brandt, our orthopedic surgery surgeon. In the mid 1960s. We started making shoes for insensitive feet. You can see some of these are early examples of specialty sandals. They called them the Carvill sandals and a lot of that research was applicable to the treatment of diabetics and diabetic foot care.

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In the 1940s, a medical breakthrough known as the Miracle at Carville freed patients from quarantine, giving them a new lease on life. One exhibit honors the legacy of Dr. Guy Henry Faget,  Director, the National Leprosarium, who pioneered a sulfone drug therapy including Promin, Diasone, and Promizole in the treatment of Hansen’s disease (HD).

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Dr. Faget had a background in Tuberculosis research and saw commonalities with Hansen’s Disease. He experimented with tuberculosis drugs in volunteer patient trials at Carville. Patients taking the sulfone drugs began to see dramatic improvements within weeks, a medical breakthrough known as the Miracle at Carville. Sulfone drugs are still used today in the treatment of Hansen’s Disease.

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“When drug breakthroughs started happening in the 1940s, neighboring people began working at Carville in good-paying jobs, and a sense of normalcy developed around the hospital. No one who worked at Carville here ever developed the disease.”

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 In the 1980s, Carville officially became an outpatient facility. Residents admitted under the former quarantine laws were allowed to stay, and new patients received treatment at clinics in Baton Rouge. The final remaining residents moved out of Carville in 2017. 

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In 1999, the US Public Health Service transferred Carville back to Louisiana. The Louisiana National Guard now owns the property where the National Hansen’s Disease Museum resides, which is open for public tours. 

Despite all the fear and social stigma surrounding leprosy, no one who worked at Carville contracted leprosy. “Ninety-five percent of us are naturally immune. And the surrounding people began to understand that. So, there was acceptance. But it did take a couple of decades.”

The museum also offers a self-guided driving tour, providing a map and marked signs indicating points of interest on the property, including the Carville graveyard, where hundreds of patients are buried.

Gravesites

“We photographed each headstone and made a database with all of the names, patient I.D. numbers and death dates.  Family members and descendants can come to the museum and find their relatives.  We have over a thousand burials on site.” 

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Many patients took aliases when they were admitted to Carville to avoid the social stigma for themselves and their family members. The gravesite database accounts for alternate names. “Nobody’s identity is lost here. The government allowed each patient tombstone to record their chosen names, death date and  patient I.D. number. This data ties to the patient records and their true identities.”

Graveyard

Today, the medical term for leprosy is Hansen’s Disease, a curable disease controlled with medicines that allow patients to live freely in society. The National Hansen’s Disease Programs research lab is now housed at Louisiana State University in Baton Rouge. Today, the NHDP provides Hansen’s disease bacilli to researchers worldwide. If you want to learn more about Hansen’s Disease or museum exhibits and tour options, check the National Hansen’s Disease Museum website.

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Karen LeBlanc

Karen LeBlanc is a freelance writer living in Orlando, Florida with many published bylines in magazines, newspapers, and multimedia sites. As a professional lifestyle writer, Karen specializes in art, architecture, design, home interiors and personality profiles. Karen is the writer, producer and host of the streaming series, The Design Tourist (www.TheDesignTourist.com) that brings viewers a global dose of design inspiration with episodes featuring the latest looks and trends from the world’s premiere design events and shows. She also publishes a quarterly magazine on design travel that you can read by clicking the link: https://thedesigntourist.com/the-magazine/ Her journalism background includes seven years on-air experience as a TV news reporter and anchor covering a range of issues from education to politics. Her educational credentials include a Master of Arts in Mass Communications from Northeast Louisiana University and a Bachelor of Arts in Communications from Louisiana State University. Throughout her career, Karen has written and produced dozens of documentaries and videos for educational, commercial, corporate, and governmental clients and appeared in many TV and video productions as a professional host.

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Karen LeBlanc

Karen LeBlanc is a travel host and writer with a popular travel show, The Design Tourist, and a companion lifestyle blog. As a widely published travel journalist and content creator, Karen is a member of the North American Travel Journalists Association. She also serves as the Design and Travel editor of the national lifestyle magazine, LaPalme. Karen believes that every destination has a story to tell through its local art, architecture, culture, and craft. This immersive creative exploration begins with authentic accommodations where the narrative of place unfolds through art, accessories, accouterments, furnishings, fixtures, and food. 

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