Three kidneys, 15 pills a day, and psychosis: The women who refuse to let lupus win

For Catherine Njeri, the morning does not begin with the aroma of coffee, but with the metallic rattle of a pill dispenser. By 6 am, she has taken two tablets to protect her kidneys from her own blood pressure. By 10 am, four more follow: steroids and immunosuppressants to stop her immune system from attacking her kidneys. By day’s end, she has swallowed about fifteen pills.

Njeri is one of thousands of Kenyans living with systemic lupus erythematosus, an autoimmune condition in which the body attacks its own healthy tissue. 

The tragedy of lupus, experts say, often lies in its camouflage. Medical literature calls lupus “The Great Imitator” because its symptoms, from fatigue and joint pain to organ inflammation, mimic malaria, rheumatoid arthritis, and even the common cold.

Njeri’s ordeal began in 2010. For years, confusion reigned. She woke with swollen lips and itching skin. Like many Kenyans, she blamed her diet. “I thought it was a protein allergy. I cut out meat, but the swelling continued. I’d drink tea and blame the milk,” she says.

In 2014, after her mother’s death and her daughter’s birth, her body buckled. Deranged liver function tests pointed to autoimmune hepatitis, a rare disease where the immune system attacks the liver. She was treated and sent home, unaware that the worst was yet to come.

By 2016, Njeri had lost her appetite, stopped eating and passing urine, and her legs had swollen into heavy, unrecognisable pillars. In one hospital visit, she received a double diagnosis: systemic lupus and end-stage renal disease. For two and a half years, she underwent dialysis at least twice a week. “When I started dialysis, it was very hard. I was around 90 kg. By the end, my weight had dropped to about 43kg,” she says.

In November 2018, Njeri’s younger brother offered her a kidney. But her lupus made the transplant a gamble: her overactive antibodies were primed to destroy any foreign tissue. They travelled to India for specialised care. Two weeks post-surgery, the lupus returned with a vengeance, attacking the new kidney.

“Doctors even considered removing my spleen to stop antibody production. That would leave me defenseless against infection. Thankfully, the kidney recovered before the procedure.”

Today, Njeri lives with three kidneys: her two failed originals and the transplant, but remains at Stage 3 failure. The lupus never truly rests; it merely waits.

In 2019, while Njeri was still recovering, Joy Jerop was a university student of Public Policy and Administration. At 22, she ran for a leadership position and lost, disillusioned by corruption in student elections. She dropped out, hiding the truth from her parents, and retreated to Juja, making furniture from old tyres. The stress of her secret life and her despair over Kenya’s systemic corruption triggered a sleeping giant.

“I wondered if I could ever make an impact in a country where we talk about corruption constantly. It felt like a mid-life crisis at 22. I was rebelling against everything,” she says. 

One day on a painting job, Jerop felt an unfamiliar pain in her joints. It lingered, then spread beneath her cheeks. After travelling home, she was diagnosed with pneumonia and treated. Upon returning, she developed mouth sores, fatigue, and a swollen, reddish face —her first signs of lupus.

Alarmed, her brother took her to the hospital on March 4, 2020, days before Kenya’s first Covid-19 case. “I thought I’d just get medication and leave,” she recalls. Instead, the physician listened, then fetched another, then another. They suspected lupus, and tests confirmed it.

She was prescribed Hydroxychloroquine, but Jerop has a genetic sulfur allergy. Within 24 hours, her face developed a hard, agonising crust; wounds opened on her head and lips. By the time she was admitted to the High Dependency Unit, her skin was peeling raw, leaving wounds on her face, mouth, and hands.

 While Covid raged, her mother stayed by her side.

After discharge, she was put on 60mg of Prednisone daily to suppress her immune system. But the drug triggered steroid psychosis. For nearly two months, she was completely detached from reality. “I went mad, literally,” Jerop says. “My family had to force-feed me my medication like a little child.”

Psychiatric care and medication adjustments eventually lifted the fog. But recovery brought a crushing realisation: the world had moved on. Her peers had graduated and started their careers.

In 2021, Jerop returned to Nairobi to finish her degree, following a strict plant-based diet. For a few months, she was in remission. Then, desperate to feel normal, she attempted to hike the Ngong Hills. Two days later, she was back in the hospital. The cycle of one step forward, two steps back became her reality.

By 2023, she landed a job in Westlands, a hard-won victory for a graduate with a chronic illness. But the corporate world was not built for a body in conflict. Long commutes and hours caused her legs to swell and fatigue to return. When the company began layoffs, Jerop, who needed one work-from-home day per week, was the first to go.

The stress of unemployment triggered her most terrifying flare yet. One evening, her body went stiff. Her tongue grew heavy, her words slurred. “I couldn’t feel one side of my body,” she says. Rushed to the hospital, her rheumatologist revealed that the disease had crossed her blood-brain barrier. Medication and a strict plant-based diet (with occasional protein) improved her condition.

After remission, she founded the Thrive Community, starting as a WhatsApp blog about her diet and experiences. It has since grown into a powerful advocacy platform. “We meet monthly, colour together, talk, and host events with doctors and experts. Autoimmune warriors also exhibit and sell their products. We plan to register as a community-based 
organisation,” she says.

As rheumatologist Philip Simani explains, lupus is a multisystem disorder where the immune system attacks healthy tissue, potentially destroying vital organs, especially the kidneys. Because lupus is “The Great Imitator,” its symptoms vary wildly between individuals, making diagnosis a gruelling, elusive process for many.

The cruelty of lupus is often compounded by its treatments. Dr Simani notes that immunosuppressants, powerful but necessary, leave patients vulnerable to opportunistic infections, forcing a delicate balance between suppressing the disease and preserving the ability to fight external threats.

“Lupus overwhelmingly affects women during their reproductive years, with females outnumbering males nine to one,” he says. “Risk typically diminishes after menopause. The exact cause of this gender disparity remains a mystery, but it is believed to involve hormonal, genetic, and environmental factors. Socioeconomic status, diet, viral infections, certain medications, and even silica exposure may also play a role.”

Because lupus is highly individualised, its impact varies. Roughly 60 per cent of those diagnosed suffer chronic muscle pain, and 90 per cent manage some form of arthritis. 
Data from Cerba Lancet Kenya shows that over 750,000 Kenyans have lupus.

In this battle, Njeri says the mission is education. She has taught her children about lupus so they understand when she needs to rest. She and other patients advocate for better coverage; while the Social Health Authority (SHA) now pays for some costs, significant gaps remain.

The cruelty of lupus is often compounded by its treatments. Dr Simani notes that immunosuppressants—powerful but necessary—leave patients vulnerable to opportunistic infections, forcing a delicate balance between suppressing the disease and preserving the ability to fight external threats.

“Lupus overwhelmingly affects women during their reproductive years, with females outnumbering males nine to one,” he says. “Risk typically diminishes after menopause. The exact cause of this gender disparity remains a mystery, but it is believed to involve hormonal, genetic, and environmental factors. Socioeconomic status, diet, viral infections, certain medications, and even silica exposure may also play a role.”

Because lupus is highly individualised, its impact varies. Roughly 60 per cent of those diagnosed suffer chronic muscle pain, and 90 per cent manage some form of arthritis. 
Data from Cerba Lancet Kenya shows that over 750,000 Kenyans have lupus.

In this battle, Njeri says the mission is education. She has taught her children about lupus so they understand when she needs to rest. She and other patients advocate for better coverage, and while SHA now pays for some costs, significant gaps remain.

Njeri notes that SHA covers Sh15,000 of her monthly prescription, leaving her about Sh3,000 out of pocket. But she still pays for all lab tests herself, around Sh12,000 when the disease is active. Before SHA, she needed Sh40,000–Sh50,000 a month to manage the condition.

She points to a deeper gap: post-transplant patients receive a renal package of Sh200,000 per year (about Sh16,000 monthly), crippled by a single-billing rule – only one claim every 30 days.

"This creates a cruel choice. If I spend Sh6,000 on lab tests, I am locked out of the remaining Sh10,000 for medication until the following month. A doctor cannot treat you without labs, but labs are useless if you can't access the drugs," she says.

"The government is willing to pay for dialysis, roughly Sh1.1 million per year, – yet hesitates to fund post-transplant care, which is significantly cheaper and returns the patient to the economy."

As Kenya marked World Lupus Day yesterday, this year's theme, "Make Lupus Visible," aimed to shine a light on the hidden, misunderstood symptoms and severe impact of this chronic autoimmune disease.

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