For Teresa Kariuki, 32, illness began quietly. As a child growing up in Aguthi ward, Gichira sublocation, Nyeri county, she was an ordinary schoolgirl, obedient and determined to complete her education. But in class 7, her health began to change.
“I started to feel sick. That's when I started to go to the hospital,” she recalls. She was experiencing unexplained symptoms.
At first, the symptoms did not point doctors towards the autoimmune disease that would eventually change her life. She remembers suffering from bloating and stomach problems and being treated for ulcers and later acidity. The symptoms would sometimes improve, only to return, leaving her family searching for answers.
The illness interfered with her schooling. She eventually completed secondary education and left school in 2012. She took on different jobs, including work in hotels, as she tried to build a life despite recurring health problems.
Then, in early 2018, her condition took a dramatic turn. She had become pregnant. She woke one day in severe pain. “I took painkillers, but soon became dizzy and increasingly unwell,” she relates. She was taken to a nearby health facility, where she was treated for dehydration and given fluids for several days.
The problem, however, was not dehydration. Her legs began feeling weak and cold, accompanied by severe pain that made walking increasingly difficult. She returned to hospital several times as doctors tried different treatments.
Teresa’s mother, Rose Muthoni, says, “Her illness began with her big toe, which was very painful for her.” She adds, “We were told that it was arthritis. She’d be given medication and we return home.”
Muthoni, on the verge of tears, says there were times when she would dress Teresa up, only to undress her shortly thereafter, “since she would be sweating profusely”.
Despite these efforts, Teresa’s condition continued deteriorating, regardless of how many times her medication was changed. She was eventually admitted to hospital and told she had suffered a stroke. “Further investigations found blood clots, including a clot affecting my eye and another my brain,” she recalls.
While the clot-related complications were treated, the crisis in her legs continued. Teresa lost sensation and mobility, and then noticed something frightening. “My leg started to change colour. It began to turn black,” she says.
As the condition worsened, doctors told her that the affected tissue was no longer viable. Her family sought a second medical opinion, but the options narrowed. She was eventually referred to Kenyatta National Hospital, where doctors reviewed her history and carried out further investigations.
Teresa says she was told that scans had revealed severe problems involving her blood vessels and blood clots. The doctors explained that removing the clots posed serious risks and that amputation had become the only feasible option.
“I thought I was going to die,” she recalls.
THE MISSING CLUES
For Teresa, accepting the recommendation was almost impossible. She had spent years trying to understand what was happening to her body. Now she was being asked to agree to an operation that would permanently change her life.
“I went into denial,” she says.
A counsellor spoke to her, while doctors continued explaining why the operation was necessary. Eventually, after more conversations with the medical team, she made the decision. “I told the counsellor, I will sign.”
The operation followed days later. When Teresa regained consciousness, the reality of what had happened began to sink in. She remembers after being returned to the recovery ward how she uncovered the hospital linen from her waist downwards. She was left struggling emotionally with the loss.
“I started to feel very sad,” she says, fighting tears. “It was very traumatising.”
The physical change was only part of the challenge. Teresa had to confront the psychological impact of losing both legs and the prospect of depending on a wheelchair. For a time, she says, she felt overwhelmed by sadness.
“I didn't feel any pain. I didn't feel any heat. The only thing I felt was sadness and hatred.”
Counselling and support from people around her helped her begin the long process of recovery. Muthoni remained one of her principal caregivers, helping with her daily needs after she returned home.
“It was not easy at all for my mother, but she helped me a lot,” Teresa says. “So after a while, I started healing slowly.”
The transition back home brought another difficult moment for her. Another reality was about to strike at her.
A HARD DIAGNOSIS
For years, Teresa and her family had seen individual pieces of a much larger puzzle: stomach problems, pain, pregnancy losses, blood clots and eventually severe damage to the blood vessels supplying her legs. But the underlying condition remained unidentified.
It was not until she later came under the care of consultant cardiologist Dr Lois Wagana, who practises at Outspan Hospital in Nyeri, that the possibility of an autoimmune disease was investigated more closely.
Teresa was using a wheelchair and experiencing widespread pain when Dr Wagana first assessed her. She also had a butterfly-like facial rash and appeared physically wasted. The history of pregnancy losses and the bilateral gangrene raised concern that an autoimmune disorder could be responsible.
Blood tests provided important clues. Her erythrocyte sedimentation rate, or ESR, was significantly elevated, while an antinuclear antibody (ANA) test was positive. A further test for anti-double-stranded DNA antibodies was also positive.
These findings, together with Teresa's clinical history, pointed towards systemic lupus erythematosus, commonly known as lupus.
Dr Wagana explains that lupus can affect many parts of the body. In some patients, inflammation can involve blood vessels. When inflammation narrows or blocks vessels, tissues beyond the blockage may not receive adequate blood supply and can eventually die.
That process helps explain how an autoimmune disease could contribute to the severe vascular damage that Teresa experienced.
For Dr Wagana, Teresa's case illustrates why lupus can be difficult to recognise. The disease does not always announce itself through one obvious symptom. It can affect the skin, joints, kidneys, heart, nervous system and other organs, while symptoms may resemble those of more common illnesses.
After treatment began, Teresa's condition improved. Her pain eased, her weight increased and the facial rash settled. She is now monitored and receives medication aimed at controlling the abnormal immune response.
Dr Wagana describes Teresa as a patient who has made remarkable progress despite the trauma she has endured.
LIFE AFTER
Today, Teresa’ s life is centred on managing a condition she knows will require long-term care. She attends regular clinic appointments and returns for medical attention whenever her health deteriorates.
“It is not easy to live with lupus,” she says.
Fatigue remains one of her major challenges. Some days, simply getting out of bed can be difficult.
“Sometimes in the morning my body doesn't want to get up,” she says.
She has also learnt to protect herself from strong sunlight because of her sensitivity to it. Sunscreen has become part of her daily routine.
Teresa's recovery has not meant returning to the life she knew before. She moves around using a wheelchair and depends on her family for some daily activities. Her mother helps transfer her and ensures that the things she needs are within reach.
Yet she has also begun rebuilding her independence. She does some work online and has started thinking about small business activities that can provide an income to support her medical bills. She rears pigs.
Dr Wagana says Teresa could potentially benefit from assessment for prosthetic options, although such a process would require an orthopaedic evaluation to determine whether she is medically suitable.
For Teresa, however, survival has already changed the meaning of what is possible. The woman who once feared that her illness would kill her now speaks about living with it, managing each day and remaining hopeful.
Her faith has played a major role in that journey.
“I really thank God. In fact, the whole story is about God,” she says. “I can say God has saved my life so much.”
Her story also carries a warning. Lupus can be difficult to recognise because its symptoms may resemble those of other conditions. Persistent, unexplained symptoms involving different parts of the body may require doctors to consider an autoimmune cause rather than treating each complaint in isolation.
For Teresa, the answer came after years of uncertainty and irreversible damage. Her experience shows what can happen when the clues to a complex disease remain scattered for too long.
She cannot change what happened to her legs. But she is learning to live with what remains. She believes she lives a ‘normal’ life
THE WARNING SIGNS
Systemic lupus erythematosus (simply known as lupus) is an autoimmune disease in which the immune system mistakenly attacks the body's own tissues. According to physician cardiologist Dr Lois Wagana, lupus can affect virtually any organ and may present differently from one patient to another.
Common warning signs can include persistent joint or muscle pain, unexplained fatigue, skin rashes and sensitivity to sunlight. Other symptoms may involve the kidneys, heart, nervous system, hair and digestive system. Because these symptoms can resemble other illnesses, diagnosis may be delayed.
Teresa Kariuki's experience illustrates the difficulty. Her illness was initially associated with stomach problems and later with arthritis, while the more serious vascular (the network of blood vessels, including arteries, veins and capillaries — that transport blood, oxygen and nutrients to every part of the body) complications emerged gradually.
Dr Wagana says symptoms that do not seem to fit together should prompt doctors to consider an autoimmune disorder. Looking at the patient's history as a whole can reveal a pattern that may not be obvious when each symptom is treated separately.
WHY AMPUTATION
Lupus does not ordinarily mean that a person will lose a limb. However, in severe cases, autoimmune inflammation can affect blood vessels.
Dr Wagana explains that inflammation of small and medium blood vessels can narrow or block them. When blood cannot reach tissues beyond the blockage, those tissues may become deprived of oxygen and nutrients and eventually die.
This can lead to gangrene. In Teresa’s case, Dr Wagana found that both lower limbs had developed gangrene, making amputation necessary.
Gangrene associated with severely reduced blood flow is a medical emergency. Changes in colour, coldness, numbness, swelling and severe or worsening pain require urgent medical assessment. In some severe cases, amputation may be necessary when tissue has died and other measures cannot restore a safe blood supply.
TESTS THAT HELP
There is no single test that, on its own, proves that a person has lupus. Doctors combine symptoms, medical history, physical examination and laboratory findings.
Dr Wagana says Teresa's assessment included an erythrocyte sedimentation rate (ESR), a full blood count, an antinuclear antibody (ANA) test and an anti-double-stranded DNA test. ESR is a simple blood test that can show whether there may be inflammation somewhere in the body.
ANA is a blood test that looks for antibodies that mistakenly target parts of the body's own cells, particularly the cell nucleus. If it is positive, additional antibody testing can help doctors investigate conditions such as lupus. Anti-double-stranded DNA antibodies are strongly associated with lupus, although a negative result does not by itself exclude the disease.
Doctors may also use urine and blood tests to assess whether organs such as the kidneys are being affected. Depending on the symptoms, scans and other investigations may be necessary.
For patients with persistent unexplained symptoms, early recognition matters. Lupus is a long-term condition, but treatment can control symptoms and reduce the risk of serious complications when the disease is identified and monitored appropriately.
