Lupus patient: I'm in pain, living in fear without drugs

Mercy Nasieku, a lupus patient, at her home in Kajiado County.[Mercy Kahenda, Standard]

Lately, 19-year-old Mercy Nasieku has been living in fear. She wears a mask and gloves, and locks herself in her house. 

Nasieku from Kajiado County, suffers from lupus disease and dreads contracting Covid-19. She has every reason to be afraid, because she's among the high risk individuals whose immunity is already compromised.

Yesterday, the world marked World Lupus Day and patients like Nasieku, whose immune system is already compromised, had nothing to smile about.

Lupus is an auto-immune system disease where the body's immune system acts against vital organs by producing antibodies that attack its own cells and tissues. Ms Nasieku lives in pain. She has fatigue, joint pains, swollen arms and experiences breathing difficulties.

Though she was expected to undergo a check-up in a private clinic in Nairobi last month, she is worried that travelling will expose her to coronavirus. But not travelling also means that she will not replenish her stock of hydroxychloroquine, her life-saving drugs that are almost running out.

"These drugs are my life. I need them to stay alive. I don't know what to do. I'm scared and I fear I might die...," the young woman shares her fears.

Her doctor has also warned her against traveling to Nairobi to pick the medicines because of the risk of exposure to coronavirus.

Low immunity

To manage her pain, Nasieku is now taking tramadol -- a painkiller which makes her weaker.

"I have ordered hydroxychloroquine but they are not forthcoming because I do not have a doctor’s prescription. How will I survive?" she poses.

Faced with an unseen deadly enemy (Covid -19) and still managing an equally life-threatening disease with no drugs, Nasieku fears that she may be starring at death.

With nothing much to hold on to, Nasieku, who was diagnosed with lupus at Kenyatta National Hospital four years ago, is clinging on to what she knows, prayer, to stay alive. 

She lives alone and locks herself in from family and friends to limit the risk of exposure to coronavirus. Whenever she leaves the house, she faithfully wears a mask and gloves. 

"I have nothing much to do to save my life save for observing these hygiene measures. I only pray to God to keep me safe," she says.

But the journey is rough, she adds. So rough that a few months ago, she attempted suicide.

"Were it not for my doctors and therapists who counselled me, I would have died a long time ago," says a desperate Nasieku.

The high cost of treating the disease is also taking a toll on her.

Like Nasieku, Canice Mulwa, another lupus patient, is also living in constant fear, pain and pressure. The Standard caught up with her at a local chemist shop in Kajiado where she works.

At the shop, she has a rope between the counter and shelf as a measure to maintain social distance while attending to clients.

"I do not trust anyone I attend to. That is why I wear protective gear all the time to limit getting infected," she says.

Mulwa was diagnosed with lupus in 2012. She has also run out of hydroxychloroquine and is very concerned. Last week, she linked up with a chemist shop in Nairobi to supply her, but she has to pay a courier service to take it to her.

"I spend Sh5,000 on drugs but I am now spending about Sh7,000 because of transport costs," she says. 

As a safety precaution, she disinfects the house often and washes her hands with soap and water after every few hours.

With a new threat, a shortage of drugs and uncertainty globally, this Covid-19 season has made life difficult for lupus patients.

Dr Fred Otieno, section head of rheumatology and an assistant professor at Aga Khan Hospital University says it is worrying that hydroxychloroquine is running out.

According to the specialist, Kenyans rushed to buy the drug after word went round that it was recommended for treating Covid-19.

To guarantee the drug supply, rheumatologists are lobbying the government to ensure they are made available to patients who need them.

"There is acute shortage of hydroxychloroquine on the shelves and in hospitals and that is why we need to stop panic-buying for the sake of those who depend on it to live," he says.