Coping with lupus stigma and heavy financial burden

As a young woman battling lupus, Natasha Muloko has had her fair share of troubles. She has been kicked out of a dormitory for fear of infecting other students, her body has rejected a donated kidney (her father’s), she has been misdiagnosed as having blood cancer, yet she is bravely tussling a disease that causes her body to fight against itself.

“White blood cells are supposed to fight foreign protein such as bacteria and viruses. For lupus patients, they get their minds mixed up and instead start attacking the organs themselves,” explains Moré Argwings Kodhek, who is charge of the Lupus Foundation of Kenya.

Ms Muloko’s disease started in high school. “The symptoms were similar to malaria. I was feverish, shaking, vomiting, tired, weak and had become darker. I barely ate and had lost so much weight,” she says.

After malaria tabs failed to help, a doctor sent her out of Tanzania to Nairobi because he thought her liver was concealing the malaria.

In Nairobi the first doctor who saw her hands, without even doing further tests, told her she had leukaemia.

Later, she was diagnosed with lupus nephritis and taught how to manage the condition. She was put on dialysis, got a kidney transplant — thanks to her father — but that kidney failed and she needed more dialysis again.

“I could not walk from here to there without sitting down for a break,” she says, her fingernails painted a stylish red and black pointing at the distance from the head of her bed in the Renal Unit at Nairobi Hospital to the curtain, a distance of about six steps.

For Ms Muloko, any drastic changes such as extreme weather, overworking and even her menses can trigger flare-ups which could leave her bed-ridden.

Pain

But it is the high cost of treating the disease that hits her family hardest.

Lupus is not a disease of the poor and about 750,000 Kenyans who suffer from it feel the financial burden.

Every month, the 30-year-old has to go through dialysis eight times, buy drugs worth Sh18,000, pay a doctor’s fees of Sh4,000 and take blood tests worth about Sh15,000. Factoring in the frequent emergency visits which often lead to hospital admission, the disease sets her family back more than Sh220,000 every month.

Additionally, every few months she has to do a blood test which costs Sh20,000.

As the disease attacks many Kenyans, especially those with a family history of lupus, they are initially mistaken to be lazy. “One day your wife is fine and healthy, you are enjoying everything and the next day she can’t cook or get out of bed. One man left his wife because he said the children weren’t being bathed,” says Mr Kodhek.

Ms Muloko has also suffered her fair share of stigma.

“I was kicked out of a dormitory because of fear that I could infect others.

“Lupus is not contagious. You can’t even get it by hugging,” says Ms Muloko. “It bothered my mother and when she threatened to go to the vice-chancellor they put me in a corner room of the top most floor,” she says.

Mr Kodhek says in the Kenyan culture, if someone suffers from an unknown a disease it is branded as either HIV/Aids or a curse.

“For a very long time people said my mother had HIV/Aids and she was bewitched,” he adds. Lupus is more genetic than it is environmental. However, there is medically-induced lupus where drugs cause its onset.

Mr Kodhek’s mother had to travel to the US to get a proper diagnosis.

“We would go to a hospital and doctors would have no idea what they were looking for,” he says.

Such challenges inspired her to start the Lupus Foundation of Kenya, which her son now heads. The organisation curates support groups and negotiates for subsidies from doctors.

Stress

Currently, there are only five rheumatologists in Eastern Africa — experts who deal mainly with immune-mediated disorders — all based in Kenya.

Ms Muloko advises fellow lupus patients not to allow emotional stress or stigma to overcome them since it causes toxicity in the body, leading to flare-ups.

“It is hard to avoid stress but you have to have the mind of a child so that you are stress-free,” she says.

Apart from organising events for Mzuka Media, a sound solutions company, the vivacious Muloko also runs a business where she sells brand watches such as Hublot and Swiss.

“A lupus patient is given 12 spoons to last for a day. For every activity such as waking up, showering, making breakfast, oiling oneself, you take a spoon.

“Before you leave the house you will have already used 10 spoons. That’s lupus for you,” she says, crediting her mother for putting the brakes on her life. “I want to move so fast because I have the energy but forget the consequences,” she says.