South African leprosy survivors – no longer outcasts

Edith Msomi’s slight foot deformity is the only reminder that she once lived with leprosy.

Young Sibusiso Tshabalala looks just like any other teenager, even though he once lived with leprosy.
(Images: Khanyi Magubane)

Khanyi Magubane

One of the simple pleasures in life that 58-year-old leprosy survivor Edith Msomi enjoys is making breakfast for her grandchildren and sipping green tea while they eat. Today Msomi is no different from any other grandmother doting on her grandchildren, but her own childhood, growing up with leprosy, was very different to that of the little ones.

In April 1968, when she was 19 years old, she was admitted to what was then called the Westford Leper Institution in Pretoria (today, the global health community  recognises “leper” to be a highly derogatory word), with a severe case of leprosy, or Hansen’s Disease, as it’s also known. She had been living with the condition for several years but because of late diagnosis, her condition had deteriorated by the time she arrived at the hospital. Permanent nerve damage had taken place in some parts of her hands and feet and her skin was badly scarred from the leprosy bacteria, which had multiplied and become septic all over her body. She says she’s not sure how she contracted leprosy, but is adamant that she did not contract it from her family or anybody close to her because none of them have had the condition.

Msomi becomes emotional when she remembers her early days at the institution. “We would be cordoned off in different wards and nurses would not want to touch my wounds. But the Leprosy Mission forced nurses to touch us during treatment and not be scared of us.”

At the institution, which she describes as an isolation camp and where she spent three traumatic years, the patients were allocated houses, but because it was during the apartheid era, the houses belonging to the white and black patients were in different wings, and the services received were also different. She remembers that the black patients were not given the same quality food or medical treatment as white patients.

The apartheid system was alive and well at the institution, she says. “We even had a jail inside the institution, where we would be arrested if we broke the law, trying to mix with the white patients or fighting for equal treatment.”

As a result of the poor medical attention received by some of the patients, Msomi sadly recalls that there was a high death rate, and she often feared that she, too, would die because her condition was not improving. The offending limbs of patients whose septic skin infections would not heal would simply be amputated; it was common to see patients without arms and legs. Msomi thought that she too would lose limbs, until a certain young doctor, which she only remembers as “Doctor Kok”, arrived at the institution and changed everything.

She says the young doctor stopped the amputations, and started a treatment programme where a lot of leprosy patients, herself included, were spared amputation.

At the end of 1970, doctors felt that she had fully recovered from the condition and that she was ready to resume life outside of the institution. She was one of the lucky ones that left the institution with all her limbs intact – and she says, also alive. Msomi says what saved her was her strictness with her treatment programme. She says one of the biggest problems among leprosy patients is the inconsistency in taking their medication, and as a result, they never fully recover.

Shortly after she left the hospital, she met and married her husband, who, she says, accepted her completely despite her disfigurements; he also accepted the son that she had at the institution. “He loved me the way I was and didn’t have a problem with the fact that I had had leprosy. It was not an issue.” Together with her late husband they had four children.

Today she lives in Katlehong on the East Rand, where she leads a quiet life with her grandchildren and sells vegetables to supplement her pension.

Edith Msomi’s experience with leprosy could have been very different had treatment and diagnosis taken place earlier, as was the case for 15-year-old Sibusiso Tshabalala.

The shy teenager from Nigel, east of Johannesburg, does not remember contracting leprosy, as he was only four years old when he was diagnosed. In 1996, his grandfather had contracted the disease and medical officials called for his immediate family that lived with him to be screened. Tshabalala and his older brother were diagnosed with leprosy. It took five years of treatment for Tshabalala to be cleared of the leprosy germs.

Looking at him now, one can hardly notice the skin scarring from his childhood when he had the disease. “I don’t remember much of what happened to me as a child. All I remember is going to the clinic regularly for medicine. I didn’t even know that I had leprosy,” he says in a barely audible voice.

Early detection of the disease made it possible for Tshabalala to continue with a normal life like other teenagers his age. He is excited about his grade nine studies this year. After he completes high school, the youth has aspirations of flying aircraft for a living. “I want to be a pilot. I love the idea of flying aeroplanes, even though I have never been on one myself.” He also enjoys soccer, singing and acting.

He says he thoroughly enjoys taking part in dramas at school – something he might not have been able to do if the effects of leprosy had damaged his physique.

The Treatment and diagnosis of leprosy

Although the treatment of leprosy is now simple and effective, one of the biggest problems standing in the way of total eradication are the myths surrounding the disease, dating back from Biblical times. The infected were traditionally isolated because of fears that it was highly contagious. The disease and its treatment were not understood.

Leprosy is a serious disease because it damages the nerves of the limbs and the face, resulting in paralysis of muscles and loss of feeling in the skin. Leprologist and medical missionary Dr Stanley G Browne, who dedicated his life to educating the world about leprosy, states in one of several booklets that he wrote that the conventional picture of leprosy is that of a poor beggar holding out his deformed and crippled hands and stumbling along on ulcerated feet. But, says Browne, thanks to the work of surgeons who are applying their knowledge and skill to these conditions, there is now hope for those who are deformed and disfigured by the disease.

Globally, the treatment of leprosy has advanced. In 1981 the World Health Organization (WHO) began recommending multi-drug therapy (MDT), a combination of three drugs: dapsone, rifampicin, and clofazimine. MDT with these drugs takes from six months to a year or even more, depending on the strength of the leprosy infection.

Global statistics of infections

WHO statistics state that according to official reports received from 109 countries and territories, the global registered prevalence of leprosy at the beginning of 2007 stood at 224 717 cases, while the number of new cases detected during 2006 was 259 017 (excluding the small number of cases in Europe). The number of new cases detected globally has fallen by more than 40 019 cases (a 13.4% decrease) during 2006 compared with 2005. During the past five years, the global number of new cases detected has continued to decrease dramatically, at an average rate of nearly 20% per year.

In South Africa, the WHO reports that in September 2006, there were only 104 registered cases of leprosy in the country, with 42 new registered cases since then.

The Leprosy Mission, which has been operating in South Africa for the past 60 years, has made great strides in providing education and health care for patients of leprosy. The mission’s director, Peter Laubsher, says the mission’s work has been to offer support to patients. Their staff complement in Johannesburg consists of three nurses, a social worker and four trained field workers. The field workers spread information through leaflets and booklets about leprosy; they also ensure that patients obtain free medication and that they take treatment regularly until they have been cleared of the disease.

Laubsher says successful treatment of leprosy is based on detecting it early. “We sometimes reach patients when they are at an advanced stage, and by then, there is very little, if anything, that we can do to reverse the damage,” he says, though he is happy with the mission’s work in spreading knowledge and facilitating treatment to those afflicted.

The virtual elimination of leprosy in South Africa has meant that organisations such as the Leprosy Mission now have to shift their attention in another direction. The mission is in the process of conducting a disability survey, to assess the needs of the disabled. Laubsher says this is the next phase of the mission’s work. “The needs of leprosy patients will decline, but due to deformities that have taken place, their disability needs will continue. We are now looking at expanding our operation to include not only those left disabled by leprosy, but all disabilities in general.”

World Leprosy day is marked on the 27th of January annually and this year, the focus continues to be demystifying the disease and ensuring that this treatable ailment is no longer seen as an ancient Biblical disease, but one that is prevalent but easily curable.

Useful links