|Organization||National Hansen's Disease Programs, US Department of Health and Human Services (USDHHS)|
|Address||5445 Point Clair Road, Carville, LA 70721-2119, USA (for mailing address see below)|
Visitors come to the National Hansen’s Disease Museum to experience the story of Carville, the only national leprosarium in the United States. Since 1894, patients, doctors and nurses (the Daughters of Charity) and healthcare professionals lived, worked, and made medical history here as they battled leprosy—also known as Hansen’s disease. Patients, many quarantined for life, left behind photographs, memorabilia, and their stories.
Hansen’s disease is now treated as an outpatient diagnosis. Treatment consists of 2 or 3 antibiotic and antimicrobial drugs taken orally. In 1894 when the Louisiana Leper Home was established on this old plantation site on a deep bend of the Mississippi River, a diagnosis of leprosy meant forced quarantine. There was little treatment and no cure and the diagnosis spelled “outcaste”--a separation from family, home and community. The federal government took over in 1921 and patients from all over the U.S. poured in, sent by their respective states where they were initially diagnosed. Forced quarantine became obsolete by the 1960s, but some patients chose to remain in the place that had become their sanctuary. By 1999, with few in-residence patients remaining on site, the National Hansen’s Disease Programs (PHS) closed their hospital and moved to smaller quarters in Baton Rouge. Thirty patients opted to remain on the federally constructed campus in Carville. Since 1999, the Louisiana National Guard has occupied the 400-acre site. The last patients left Carville in 2015.
The museum’s mission is to collect, preserve and interpret the medical and cultural artifacts of the Carville Historic District and to promote the understanding, identification and treatment of Hansen's disease (leprosy) by creating and maintaining museum displays, traveling exhibits, publications and a Web site to educate the public about US leprosy history. The museum was officially opened in July 2000. Its origins spring from the collection of artifacts for the 1994 Carville Hospital Centennial and the 1996 Daughters of Charity Centennial exhibits.
Current museum exhibits include Patient Stories; The U.S. Public Health Service; Patient Life at Carville; Daughters of Charity (first nurses); Stanley Stein and The STAR magazine; Adaptive Technology, Treatment of Leprosy; Site History and Research and Rehabilitation of leprosy. Items of interest on display include the microscope of Sister Hilary Ross, pressroom equipment from the patient’s magazine The STAR, furnishings from patients’ dormitory rooms, a collection of legal tender used in leprosaria worldwide, patients’ artwork, surgical and autopsy equipment, hand-cranked wheelchairs and hospital Mardi Gras memorabilia (floats and costumes).
The Museum also holds a substantial photographic collection created by professional photographers, patients, medical personnel and the Daughters of Charity, as well as a collection of medical artifacts including medicines, laboratory equipment and modified tools designed for patients with insensitive and disfigured hands, customized handmade shoes and the Carville (healing) sandal.
Collections span the entire history of the treatment of leprosy (Hansen’s disease) on this site (1894 to 1999), the Daughters of Charity’s work at Carville (1896—2005) and the mission of the U.S. Public Health Service at Carville (1921—1999), Stanley Stein and The STAR Magazine (1931—present).
The Daughters of Charity collections consist of correspondence, publications, photographs, and newspaper clippings compiled by the Sisters to document their mission at Carville. The collection is especially strong in documenting the everyday life of the patients. The collection includes extensive correspondence and diaries from the Daughters of Charity, but does not include medical records, nor does it include official correspondence of the Medical Officers in Charge.
The US Public Health Service collections tell the history of the mission of treatment, care and rehabilitation of leprosy at the national leprosarium by the federal government (1921-1999). Special collections include HD Teaching slides, and Medical Officer in Charge daybooks 1921—1960.
Stanley Stein and The STAR Magazine: Patient Stanley Stein was the first editor of this patient publication. He arrived for treatment in 1931 and quickly began publishing The STAR’s precursor The Sixty-Six Star-- from 1931-1934. Stein’s magazine employed dozens of patients over the decades and achieved a readership of 60,000+ worldwide by the time he died in 1967. The STAR’s photographs, first person reporting, and advocacy coverage makes it a useful resource in understanding the ramifications of social changes at the hospital and beyond as leprosy became a treatable disease and went from forced quarantine to voluntary admission. 1931-present.
Note concerning patient names.The majority of patients at Carville took aliases when they entered the facility. This was a common practice aimed at reducing the social stigma of leprosy for the patients' families. Many patients retained their Carville name throughout their life. However, some patients went back to their real names in later years. Real names are used in cases where the patients didn't take an alias or went back to their real name at some point in their lives. In cases where patients did not want their real names revealed, the patients' wishes have been respected and aliases have been retained.
1. Administration, 1896-1999: Annual reports and other general administrative material. Public Health Reports; Financial Data, 1896-1980s. Annual financial reports and expenditures. Arranged chronologically.
2. Daughters of Charity, Annals & Letters, 1896-1999: (1896-1920) Handwritten and typed correspondence with the Board of Control and the Mother House at Emmitsburg, Maryland. Diaries kept by the Daughters of Charity who were in residence at Carville. For the years 1934-1962, the annals were typed accounts of day-to-day activities prepared by the Sisters. From 1962-1999, the annals are compilations of articles from The STAR and news clippings) Arranged chronologically.
3. Facilities and Engineering: Collection of blueprints, surveys, reports and tools used in hospital construction and maintenance. Interesting artifacts include Corinthian capitol from Indian Camp Plantation (which served as the administration building from 1896 to 1999) and survey equipment from the 1930s. Bulk: 1920s—1990s.
4. HD Dissertation and Thesis Collection: Published research by graduate and professional level students focusing on the social issues, rehabilitation and psychological aspects of patients hospitalized for leprosy in the United States. Approx. 50 papers.1960 to present.
5.HD Film Collection: Instructional films created at the U.S.P.H.S. hospital in Carville by doctors, rehabilitation specialists and the Training Department. Twenty topics from casting techniques to the care of the eye in leprosy on DVD. Included in this collection are documentary films made by U.S.P.H.S. staff as well as those outside the hospital system, e.g. Triumph at Carville, Exiles in Our Own Country, Roots of Faith, and Banished Living with Leprosy. Approx. 20 titles, DVD.
6.History, 1894-1999: General and topical histories of the National Hansen’s Disease Programs and the Carville facility.
7.Johnny Harmon Photography Collection: Johnny Harmon was a patient who became The STAR magazine’s chief photographer (active 1944—1957) creating a vast archive of photographs depicting patient life, activities, special events, entertainers and VIP visitors, buildings and grounds. Searchable by subject which include: The Daughters of Charity, American Legion Post, Patients School, The STAR Staff, Holidays, Celebrations, Medical Staff, Sports and Leisure. Film negatives, print copies and digital formats. 1944-1957
8. Legislative History of Leprosy: A chronological compilation of federal, state and local laws that address and affect the care and treatment of persons diagnosed with leprosy. Many laws were amended due to advocacy efforts of Carville patients. Includes collateral materials. Digital and hard copy formats.
9.Leprosy in Literature: Patient and staff authored memoirs focusing on autobiographical accounts of living and working with leprosy in many cultures and timeframes. Fictionalized stories written (by non-patients) with leprosy or Carville’s hospital as a focus included in collection. 1930s to present.
10. Newspaper Clippings, 1890s to 2000s: Articles about Carville’s hospital staff and patients and Hansen's disease in the US from local and national newspapers. Arranged chronologically and keyword searchable.
11. Oral Histories: Staff and patients of the national leprosarium give personal accounts of their work and daily life here as medical professionals and patients. The collection of almost 100 oral histories is mostly in digital format, most have written transcripts. About half are audio only and the balance are video interviews. Four interviews with Hawaiian patients from Kalaupapa. Some restrictions apply. In-house access only. 1990s to present.
12. Outside Organizational Involvement: American Leprosy Missions, Lions Club, American Legion and American Legion Auxiliary; The Forty and Eight (veterans), Disabled American Veterans and Auxiliary, Lions Club, Delta Sigma Epsilon Sorority, Damien-Dutton Society. Bulk dates: 1940s—1990s.
13.Patients’ Life: Correspondence, photographs, news stories, documenting individual patients; photographs and programs documenting patient activities and life includes: patients’ school, recreational and social activities, sports teams, musical programs, clubs, special events, plays, Christmas programs, and Mardi Gras celebrations. Some individual patients represented: John Early, Betty Martin, Stanley Stein, Mary Ruth and Daryl Broussard, Johnny Harmon, Josefina Guerrero, Gertrude Hornbostel, et al. Bulk dates: 1930s through 1960s.
14. Publications: Includes printed matter produced at Carville concerning HD geared toward the general reader. Medical Vertical Files contain over 11,000 entries for medical reprints from 1920s to 1990s. The focus is on medical research and rehabilitative techniques of leprosy treatment Medical Journals: International Journal of Leprosy, Leprosy Review, Indian Journal of Leprosy, Hansenologia Internationalis, Korean Medical Abstracts, Revista Argentina de Dermatologia, etc., collected by the Carville Medical Library. Collection includes rare international monographs about leprosy, Bulk: 1921—2000. The Point Clarion newsletter, first named Personnel News Bulletin, was published by staff (incomplete—1959 to 1988) and The Question Mark, published by students of the Carville School (1949 to 1980s) are included in this collection. Hard copy only.
15. Stanley Stein Archives: Stanley Stein (real name Sidney Levyson) began “The Sixty-Six Star” magazine in 1931 only 2 months after beginning his quarantine at Carville. His relentless advocacy and political connections were reported on in The STAR. His office files have been cataloged by subject and focus on medical professionals, legislation, patient advocacy, and patient organizations and other topics of interest to the patient population. Additions to some files by later patient editors Louis Boudreau and Ray Elwood. Correspondence, photographs, and journal articles. Bulk: 1941-1980. Hard copy only.
16. The STAR: The STAR Magazine was established by patient Stanley Stein and has been in publication from 1941 to the present. A complete set of the original volumes in chronological order are searchable by printed index. The STAR is also found on the Internet at http://louisianadigitallibrary.org/islandora/object/lsuhsc-p15140coll52%3Acollection
The digital index is keyword searchable and may be downloaded and printed. The STAR’s predecessor publication, The Sixty-Six Star , from 1931 to 1934, was discontinued due to publication of “Leper’s Mass” article scandal; chronological order; hard copy only (incomplete). Also photo file index from The STAR offices organized by subject. 1941 to present.
Restricted materials include unpublished clinical photos of patients and lists of patients which show real names, home addresses, and other personal information.(Updated by Carville Museum, 6 April 2017)
|Name||Elizabeth Schexnyder, Curator|
|Organization||National Hansen's Disease Museum|
|Address||National Hansen's Disease Museum, 1770 Physicians Park Drive, Baton Rouge, Louisiana 70816, USA.|
|Telephone||E Schexnyder: +1 225 642 1950|
|Fax||E Schexnyder: +1 225 642 1949|