A Life Marred by Disease, Shame
Bakari was once respected in his small village. He worked hard and made an honest living as a farmer and as a daily wage labourer.
But Bakari’s life began to change when he fell sick. The fever in Bakari’s body and pain in his limbs hindered his work. His condition grew progressively worse, and soon Bakari lost all feeling in his fingers and feet. With nerves failing to send pain signals, Bakari suffered wounds that were stubborn in healing. His hands began to bend and deform in paralysis.
Then came the dreaded diagnosis: leprosy.
Some may consider it an archaic condition that no longer occurs, but for Bakari and thousands of others, it is a crippling reality. In 2018, there were 208,619 new cases of leprosy,1 also known as Hansen’s disease, most of which occurred among poor and other vulnerable, marginalised population groups.2
As Bakari became disfigured, a physical and emotional barrier formed between him and the rest of society—a barrier commonly experienced by leprosy patients.3 Family and friends shunned Bakari as the word “leprosy” stripped his dignity. Like many people in his area, they were afraid the disease would spread to them, so they avoided any contact with Bakari.
"... they treated me with hostility. But I was determined to use the road and thought that one day people would understand that I am a man with value.”
For many, the stigma surrounding leprosy hinders even seeking medical treatment.4 Though leprosy is curable and 95 percent of people are naturally immune, too few people understand these facts. According to a GFA World special report, “Believing there is nothing to be done or that treatment is too expensive to obtain, those who could be cured of their disease hide in secret, waiting for the ‘unavoidable’ day when sores and disfigurement announce them as ‘lepers.’”5 And then they are often victims of discrimination and ostracism, sometimes rejected by their own families and forced to live in leprosy colonies.
“People were very cruel,” Bakari said, “and they treated me with hostility. But I was determined to use the road and thought that one day people would understand that I am a man with value.”
Bakari took medication, but the disease was too advanced for it to improve his condition. He continued to worsen, with extensive damage to his feet and hands. Leprosy, an infectious disease caused by bacteria, attacks patients’ nerves and mainly affects their skin, peripheral nerves, eyes and the mucous membrane in their upper respiratory tract.6 Left untreated, this can lead to crippling deformities, especially in one’s hands, feet and face.7
For Bakari, as for other leprosy patients, manual labour became increasingly difficult—even dangerous—as the disease took its toll.8 Everyday tasks became a challenge. Compounded by the social stigma, many leprosy patients can’t find employment and often resort to begging.9
Ostracised by his family and community, Bakari suffered with his debilitating disease alone. For many years, he lived in humiliation and distress. Had he done something to deserve this? Was he now less of a man? Would anyone accept him; see his value?