Leprosy: the reality in NamibiaBy: JANA-MARI SMITH
PERCEIVED as a forgotten or biblical disease, leprosy cases continue to pop up in Namibia annually.
Today, Namibia has a total leprosy population of about 60 people, the majority of whom live in the Kavango or Caprivi regions.
The biggest community of leprosy patients, some of whom have been cured and others who are still on treatment, live in Mashare, just east of Rundu.
For decades, Mashare was the site of a leprosarium – a hospital built exclusively to treat and quarantine leprosy sufferers – until the leprosarium was closed in the 1980s during the war of independence.
For many Mashare remained a central point of their lives – a place where they bonded with people who shared their experience of isolation and acceptance, and so they trickled back there over the years, eventually creating a quasi-leprosy community.
Isabel Clara Haingura, the Rundu district leprosy and tuberculosis co-ordinator, says since the last screening of patients was done in the Kavango region, 58 patients have been diagnosed in total. Sixteen patients are still on treatment in the Rundu district and 26 leprosy patients are on treatment in the Kavango region.
Doctors say the major impact of the disease is disability and deformity. Haingura explained that “many of them are disabled and it is difficult to walk. The other problem is injury. They lose sensation and don’t realise when they hurt themselves. They also take long to heal”. She says a critical part of her job is to ensure that leprosy patients are informed on the practical ways to help themselves and keep themselves injury free.
Although a popular myth of leprosy is that body parts simply fall off, most leprosy patients in fact lose their limbs as a result of injury because leprosy causes a loss of sensation, especially on the areas of the feet, hands and face. Many become blind, or injure their hands and feet.
A doctor who works with leprosy patients explained that leprosy bacteria are similar to tuberculosis bacteria, but it can take years to detect whether someone is infected. Regular screening in affected areas is vital because the “leprosy bacterium is a very slow growing bacterium.”
The doctor explained that the mode of transmission of leprosy is in the same class as tuberculosis – the spray of body-fluid droplets from one person to another.
Leprosy “does not kill, it causes nerve damage and it disables and deforms the patient”. Leprosy attacks the nervous system of the body, and can particular cause damage on the face, the feet and the hands. In the majority of cases, leprosy patients end up with a disability because they are unable to feel sensation and can hurt themselves easily. Because the leprosy patient has nerve damage on the skin, on the hands or toes, there is no feeling and so they damage easily. Leprosy patients who are on treatment quickly lose their ability to infect others.
Another myth is that leprosy is incurable. In fact, Namibia began a multi-drug combination therapy, sponsored by Europe, to treat patients with leprosy. The treatment takes almost a year, but if a patient sticks to the programme, they are eventually cured.
“In the olden days people thought the disease was incurable, but it can be cured. The treatment lasts between six and 12 months, then a person is cured and free from transmission,” a Rundu doctor explained.
The challenge is to detect leprosy early, so that deformities and disabilities can be prevented.
Willem Maya, a chief registered nurse in Rundu, says that although the community of Mashare, and a few other isolated places in the Kavango and Caprivi, have accepted leprosy survivors, the taint of the disease can harm children of leprosy survivors.
“The worst stigma is for the children. They are worst off.” Maya explained that while leprosy survivors are encouraged to mingle with healthy people, once they are on medication or have been cured, the fact is that “they face the same challenges and they get closer support from each other when they stay close together.”