Carville – unique history of leprosy and a Louisiana leprosarium March 2019

Carville is an important museum located in the first state run leprosarium in the USA. I visited it with Deanna Hagge after seeing contemporary leprosy patients in the USA Hansen’s Disease service in Baton Rouge. It is on the banks of the Mississippi in cotton growing countryside. I first visited Carville in 2005 when there were still a couple of elderly leprosy patient living there. The bright southern light lit the long corridors, and I imagined the patients who had lived there. My memories were strengthened by photos of that visit in my London clinic. Now the site is a museum and captures the life and the history of Carville, Louisiana with patient stories. There were leprosy cases in the Southern USA at the end of the 19 century who needed treatment, so an institution was established for them, initially run by Catholic nuns, the “Sisters of charity”. In 1917 the institution became a state institution and later a federal one. There is an introductory video on leprosy with the commentary by David Scollard (former Head US of Hansens Diseases Service). The display captured the ingenious adaptations patients made to help their lives including special wheelchairs. The studies on developing an effective treatment for leprosy where done here, promin, an early injectable leprosy antibiotic in the 1940’s. Racism was present with segregation of black and white patients, requiring duplication of everything for staff or patents. Black patients experienced doubling of stigma. The changing governance of leprosy at Carville, as a US government institution was shown in posters. The role of the sisters of charity who initially ran the leprosarium was beautifully explored in documents and posters. “The Star”, a leprosy patient lead publication was written and produced here and they have all the copies. It was an important patient voice and I explored patient stories. The role that veterans played was discussed as patients and advocates. Surprisingly there is no information about where the patients came from and where they had acquired their leprosy. I am interested in this because in London, UK I have seen patients from 34 different counties. Contemporary leprosy with current treatments as recommended by the World Heath Organisation and provide free to government leprosy programmes everywhere was explained. I featured in posters I made with Sandy Patience in 1996 (funded by Lepra) in the media section. Patients were given a number and often took aliases on entering the institution. Inmates escaped to get drunk, have sex and gamble and could then be imprisoned. The need to escape to do these activities gives it a uniquely American perspective. Mardi gras is important In Louisiana and they celebrated other festivals such as Halloween. They played football and golf and the other local teams had to come and play in Carville, occasionally the Carville teams won. The museum concluded with information about contemporary leprosaria with posters on treatment and biology. The work on the museum has been done by Elizabeth Schnieder, a historian. We drove round the institution, stopping at the infirmary and the cemetery, with 400 US military style gravestones. The museum was rich in detail and I hope I can visit again.