Out of the Shadow of Leprosy: The Carville Letters and Stories of the Landry Family

Introduction: A Family and a Disease

5 = Introduction A Family and a Disease My great-grandparents, Joseph Terville Landry and his wife Lucie, had five children who lived to adulthood: Edmond (my grandfather), Norbert, Marie, Albert, and Amelie. (It is believed a sixth child died in infancy.) All five of the adult children spent the last years of their lives in Carville, Louisiana, at the home/hospital for the treatment of leprosy now called Hansen’s disease (HD). Norbert, the first to be diagnosed and incarcerated , was there from 1919 to 1924, followed by Edmond, 1924 to 1932; Amelie, 1934 to 1940; Marie, 1941 to 1962; and Albert, 1941 to 1977. When Norbert was diagnosed with leprosy there was no cure for the condition, many public misconceptions about it, and little scientific understanding of its transmission. A person in Louisiana diagnosed with leprosy might hide from the public or seek treatment at the Lepers Home in Carville; there were no other viable choices at the time. The disease was mysterious, secret, incurable, and feared. Only three months after Norbert returned home from serving in the army in France in the First World War, he was diagnosed with leprosy and went voluntarily to the Louisiana Leper Home. The family was devastated that he had this disease and believed at the time he had contracted it in France. Secrecy surrounded his incarceration. By the time Edmond went to Carville in 1924, more people in New Iberia knew of his condition, but fear still surrounded him and his disease because this was now not a condition limited to Norbert but one that affected other family members. Amelie had shown symptoms as early as 1923 but remained home until 1934, perhaps depriving herself of the limited treatment available at the time. Marie and Albert managed to keep their freedom and privacy until 1941, but they had already been emotionally, if not physically, affected by the disease. Albert moved from New Iberia, 6 Introduction Louisiana, perhaps to avoid the disease and its stigma, and Marie never married, conceivably fearful that she could infect others. Much has been learned about leprosy since those early days. The myth that hands or feet fall off has been dispelled. The public now knows that leprosy is a disease of the peripheral nervous system that also damages the skin; consequently, patients with untreated HD may lose the feeling in their extremities. Consequently, they often unknowingly injure their hands or feet, causing damage and deformity and possibly medically necessary amputations. Hansen’s disease is not, as long supposed, the leprosy described in the Book of Leviticus in the Bible. This biblical leprosy included multiple skin conditions that marked a person as unclean and banned from the community . This misunderstanding has led to the assumption that HD patients are somehow morally responsible for their condition and thus should remain outside the community. Even today I have heard sermons associating the leprosy in the Bible with today’s HD and using the occasion to give graphic misrepresentations of leprosy, a disease like any other. Some of these sermons have been so graphic that my mother, Edmond’s daughter “Teenie,” has remarked that those were the only times she wanted to leave church and have a drink. There are theories but no definitive understanding of the cause for HD. Some think that soil may hold the bacillus and there are studies linking its transmission to the armadillo. It is thought to be spread to humans by long-term association with an infected person either through skin-to-skin contact or through the respiratory system. Although we are not sure of its transmission, we do know that it is only mildly contagious. Genome research lets us know that only 5 percent of the population has a genetic predisposition to HD and even those individuals are not necessarily infected since long-term exposure to a person with untreated HD is needed to contract the condition. It would seem that heredity would be a factor in the disease. This has not been proved, but a genetic susceptibility to it may be inherited. While all five of the Landry siblings contracted the disease, their parents showed no signs of it nor did Edmond’s wife, children, or grandchildren. The same is true of other families who have had family members with the disease. One or more family members might have Hansen’s disease while others are not affected. Introduction 7 When the...