Lerato was walking home from school in Lesotho in September last year when she felt a severe pain in her left thigh. The next morning, the young girl couldn’t walk. In the following days the pain got worse.
After several visits to the local hospital over the next five months, Lerato, 10, was diagnosed with tuberculosis (TB) of the bones. She began treatment on April 19.
A few days later, with the help of a translator, Lerato and her parents tell me this story as we sit inside their small, sand-brick home in Ntsirele, a village on the fringe of the capital, Maseru.
Since Lerato first felt the pain in her leg, the TB has spread through her body. While crippled by her illness and supported by a small green walking frame, Lerato’s face is alive with youth and resolve.
In March – before the TB was confirmed – doctors diagnosed a septic abscess on her buttocks. This requires regular medical attention. For a 10-year-old, Lerato’s dealing with a lot, though you wouldn’t think so when talking with her.
Lerato’s mum, Malebohang Mokone, 41, is proud of her daughter for staying strong and dignified. But underneath the welcoming smile, the mother’s strain and uncertainty shows.
The stress, she says, is made worse because the family does not have the funds to fully support their daughter. When there’s not enough money for public transport, Mokone hoists Lerato onto her back and carries her to the main road, where they catch a minibus or local taxi to the clinic.
Lerato’s mother used to sell brooms on the streets of the capital – this helped bring the family a little money. But since Lerato fell ill, Mokone has been forced to give up work to care full-time for her daughter.
In Lesotho, TB medication is free, but the associated costs – travel, x-rays and a special diet, to name a few – are difficult to meet for poor families. Almost 60percent of the population of 2million live on less than $2 a day.
After many visits to the hospital and several consultations with health workers, Mokone says she is still waiting for a clear explanation as to how Lerato contracted TB.
Dr John Badia, a Lesotho-based clinician, says TB can affect any tissue within the body, but the airborne and contagious infectious disease primarily attacks the lungs.
“Occasionally, when the bacteria replicates (multiplies), and you get a blood-borne infection, or there is a high concentration of the bacteria within the lungs it basically can reach any part of the body.”
Back in the Mokones’ home, it’s impossible not to notice Lerato’s calmness. A quiet authority resides within her. From the moment she crawls across the bedroom floor and gathers herself up onto her little walking frame, she unwittingly commands the respect of the room. She doesn’t complain, nor does she expect any special treatment.
When asked if she has questions about her illness, Lerato promptly replies: “Truly, no questions.”
Lerato’s father, Napo Mokone, who had TB in the past, relies on part-time gardening for an income.
But the drought that’s crippling Lesotho leaves little work for him, and many others. Unemployment is at almost 30 percent in the landlocked country.
Napo, 45, is worried that Lerato may not be a victim of TB, but of witchcraft. “I don’t believe it is TB for the bones,” he says through the translator. “I believe it is something done deliberately.”
The translator, Justice Kalebe, tells me it’s common in Lesotho for people to believe that witchcraft can cause illnesses or that supernatural spirits are responsible for events.
“In the local context when someone says it is a deliberate thing it means witchcraft,” says Kalebe, who is also a photographer and a board member of a centre that cares for disabled children.
He is trying to raise funds for Lerato’s family and increase awareness about the debilitating impact TB has on children.
According to the 2013 Lesotho ministry of health data, 579 new cases were reported of children with TB, of which 12 percent were extra-pulmonary – outside the lungs. Lesotho’s minister for health has yet to respond to questions.
The 2015 global report on TB – produced by the World Health Organisation based on data collected in 2014 – said Lesotho had 368 new cases of TB in children (14 years and under) in that year.
Thato Mokhehle, a nurse who now works with the UN Children’s Fund, Unicef, on public health programmes, says TB of the bones in children is rare and it is often “misdiagnosed”.
“The signs and symptoms are different from that of pulmonary TB, which is the most common type here, so you find people getting all sorts of treatment which are not for TB,” she says.
From 2009 to 2014, Mokhehle worked at a health clinic in Thaba-Bosiu, about 20km east of Maseru.
“Working at the clinic I met with only one case of a child diagnosed with TB of the bones,” she tells me.
And, she saw only two adults with the condition.
Doctors and health workers will tell you that TB is a disease of poverty.
Born from poverty and fuelled by poverty, the disease cannot be defeated without resolving wider social and economic problems. Education, jobs, good housing, proper sanitation – the list goes on.
“TB has been a health concern for several thousand years, and millions continue to be afflicted by this disease,” Dr David Spiegel wrote in a 2005 paper on TB of the bones, in the medical journal Techniques in Orthopaedics.
“TB is most common in areas with crowding, poor sanitation, and malnutrition,” he says.
UN and World Bank figures show that 57 percent of Lesotho’s 2million population live in poverty. As for the wider region of sub-Saharan Africa, the figure is about 40percent.
In 2014, the WHO estimated that 9.6 million people fell ill with TB. In the same year, 1.5 million people died of the disease.
In better news, since 1990, there has been a 47percent decline in TB deaths globally. But, in league with HIV, TB remains a major cause of death – particularly in the poorer regions of the world such as sub-Saharan Africa. In 2014, globally, 1.2 million people living with HIV developed TB.
Young Lerato represents the reason why more needs to be done to eradicate this persistent yet preventable health problem.
For now, she just wants to get better and return to school. This appears some way off, though. Her recovery continues but it’s slow going. The good news, says Badia, is that if Lerato keeps taking her medication her chances of recovery are “extremely good”.
With TB, “you’ve got 80 to 90 percent absolute cure rates”, provided the patient takes the medication “religiously”.
As for Lerato’s bone structure, this won’t repair. “In most cases, TB of the bones causes permanent impairment,” says Badia.
So, it’s likely that Lerato will live with her hunched back and weak legs for the rest of her life. But if her determination is anything to go by, she will continue to overcome.
Asked about her future, a smile emerges as she says: “I would like to be a teacher.”
Meanwhile, Badia wants to see the “creation of a medical insurance scheme for low-income people to assist people during emergencies”.
However, the Kenyan-born doctor who studied in South Africa and Australia, says this insurance would not cover everyday procedures, like an x-ray and scan, which are available in Lesotho’s public hospitals but at a modest fee.
“Because many people don’t even have those little amounts of money, it’s increasingly putting a lot of strain on families,” he says.
“Delays in care often result in worse health outcomes. This is particularly tragic for diseases such as TB, which if treated early, are curable and with better living conditions are preventable.”