Have you ever heard of Hansen’s disease? What about its more common name, leprosy? A disease that feels like it should belong in the history books, more than 200,000 people are still diagnosed with Hansen’s disease every year around the world, mainly in South America, Africa, India and south-east Asia. Given this distribution in the developing world, it’s easy to forget that it was a problem in the US until well into the 20th century.
US company Deep Water Theatre Collective set their play, Bend in the River, in the Carville National Leprosarium in the early 1940s. Shut away from the world, the residents are stigmatised and shunned, rejected by their families and communities. They’re forced to change their names, and are tended for by Dr Guy Henry Faget and his team of dedicated nuns who act as nurses and spiritual counsellors. The exact cause of the disease is unclear – although it’s known that certain bacteria are involved – and there are no good treatments, only isolation from the world and the hope of a clean run of twelve monthly skin scrapings.
As Faget’s research starts to lead to new hope for a cure, resident Stanley Stein resurrects “The Star”, a newsletter describing life at Carville and raising awareness of the disease. Other residents carry on with life in the confines of their quarantine, falling in love, falling pregnant and volunteering for endless clinical trials of the latest therapy. Finally, something works. It’s a new drug called Promin, and the effects are astounding. It makes Faget’s name as a researcher and changes the lives of many Carville residents.
Mandatory quarantine for people with leprosy was revoked in the US in the 1950s, once it became clear that the disease wasn’t nearly as contagious as had been feared. Today Carville is a museum dedicated to Hansen’s disease, brought back to life for just one week here in Edinburgh.
- KA
Bend in the River has finished its run at Greenside @ Nicholson Square - https://tickets.edfringe.com/whats-on/bend-in-the-river
Promin – the first breakthrough drug for leprosy: https://en.wikipedia.org/wiki/Promin
The National Hansen’s Disease Museum: http://www.hrsa.gov/hansensdisease/museum/
The Carville Star: http://www.fortyandeight.org/the-star/
Previous issues held at the Louisiana Digital Library: http://www.louisianadigitallibrary.org/cdm/landingpage/collection/p15140coll52
Leprosy in Louisiana: https://en.wikipedia.org/wiki/Leprosy_in_Louisiana
Is Hansen’s disease contagious?: http://www.medicinenet.com/is_leprosy_hansens_disease_contagious/article.htm
Information about Hansen’s disease: https://www.cdc.gov/leprosy/