Liv­ing out their lives with lep­rosy

Af­ter decades at hos­pi­tal in Sri Lanka, pa­tients could leave at any time ... but have nowhere to go

Chicago Sun-Times - - NATION / WORLD - Ross Vel­ton This re­port was sup­ported by a grant from the Pulitzer Cen­ter on Cri­sis Re­port­ing.

HEN­DALA, Sri Lanka — Vithana Gu­nathi­lake’s motto is tat­tooed across his chest. The ink faded dur­ing his years here, but he still be­lieves in the mes­sage: Do or Die. To prove it, he cra­dles a har­mon­ica with his dam­aged hands and starts play­ing.

For seven decades, his home has been the Hen­dala Lep­rosy Hos­pi­tal near Sri Lanka’s cap­i­tal of Colombo. When he and the nearly 40 other pa­tients here even­tu­ally die, the lep­rosy hos­pi­tal will close for good. Un­til then, it serves as a sanc­tu­ary for ag­ing men and women with nowhere else to go.

“I’ll be here un­til my death,” said Gu­nathi­lake’s friend, Ab­dul Hassaan, 59. He has four chil­dren, but they don’t visit. “For this dis­ease, they are very fright­ened,” he said, point­ing to where his leg used to be.

Most pa­tients at Hen­dala have sim­i­lar sto­ries of be­ing aban­doned by their fam­i­lies af­ter lep­rosy ru­ined their bod­ies. The dis­ease dam­ages nerves, skin, limbs and eyes. Most peo­ple are nat­u­rally im­mune to the lep­rosy bac­te­ria. And even if caught, the slow-grow­ing germ can take years to cause symp­toms.

Hassaan lost his leg to an in­fec­tion. The fin­gers on his left hand are mostly stumps, and he can’t see very well.

Hassaan chose to re­main at Hen­dala the past 20 years to live with peo­ple who un­der­stood the way he looks, rather than fear him. He found a girl­friend in one of the fe­male wards. “I’m liv­ing very hap­pily. I never think about my pre­vi­ous life,” he said.

Hen­dala at first was more like a prison than a sanc­tu­ary. “If we ran away, the po­lice would catch us and bring us back,” re­called Ed­ward Al­wis, 87, the hos­pi­tal’s old­est pa­tient. He re­mem­bers be­ing locked onto an ox cart and packed off to the fa­cil­ity in 1943, at age 14.

“You were a non-per­son, not beloved by God,” said his­to­rian Lodewijk Wa­ge­naar about at­ti­tudes to­ward lep­rosy when Hen­dala opened in 1708, when the Dutch con­trolled Sri Lanka. In bib­li­cal times lep­rosy was seen as curse.

Fewer lep­rosy hospi­tals ex­ist to­day be­cause there’s not much need for them. If the dis­ease is caught early enough — dis­col­ored patches and sores on the skin are early signs — a mul­tidrug ther­apy de­vel­oped in the 1980s with three an­tibi­otics can usu­ally cure lep­rosy in six to 12 months, al­though any de­for­mi­ties are per­ma­nent.

Hen­dala’s pa­tients can leave when­ever they want, but few do. “They’re in their late 70s or 80s, and most of their re­la­tions are dead,” said Ma­rina Joy Sa­banathan, 73, a re­tired physi­cian who worked at Hen­dala in the 1970s.


The band at Hendala Lep­rosy Hos­pi­tal, near Colombo, Sri Lanka, re­hearses.

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