Behind every lupus diagnosis is a silent battle the world rarely sees: the pain, stigma, strength, and resilience of individuals living beyond the myths surrounding the disease. Their stories reveal deeply human journeys of survival, courage, advocacy, and hope in the face of a life-altering autoimmune condition. CHIJIOKE IREMEKA writes
For years, Safinat Emengo lived in pain without understanding why her body seemed to be failing her.
Long before she became the Founder of the Mablevi Lupus Foundation and one of Nigeria’s leading lupus advocates, she was simply a woman desperately searching for answers while her body slowly turned against her.
“I knew something was wrong, but nobody could tell me what it was,” she said softly.
What followed was a painful journey marked by confusion, fear, medical errors, emotional trauma, and years of suffering that nearly broke her spirit.
The 46-year-old Emengo was eventually diagnosed with lupus around 2001 in Germany, after enduring four years of medical misdiagnosis in Nigeria.
The woman said all the efforts put into desperately trying to understand what was happening to her body, physically weakened and emotionally drained her.
According to the Mayo Clinic, lupus is a chronic autoimmune disease in which the body’s immune system mistakenly attacks healthy tissues and organs, causing widespread inflammation and damage.
It explained that lupus is a long-term condition that commonly affects the skin, joints, kidneys, brain, heart, and lungs, often marked by unpredictable flare-ups and periods of remission.
Describing a flare-up as a sudden worsening or intensification of symptoms, the clinic noted that lupus causes swelling and irritation.
“Lupus causes swelling and irritation, called inflammation, that may affect joints, skin, kidneys, blood cells, brain, heart, and lungs, and can be hard to diagnose because its symptoms often are like those of other illnesses.
“A common sign of lupus is a facial rash that looks like butterfly wings across both cheeks. The rash gets worse in the sun. Many but not all people with lupus get this rash. There’s no cure for lupus, but treatments can help manage symptoms,” Mayo Clinic added.
Similarly, the United States Centres for Disease Control and Prevention described lupus as a long-term autoimmune disease that affects many parts of the body, noting that its varying symptoms often make diagnosis difficult.
“Lupus has no cure, but medicines and lifestyle changes can help treat and manage it,” the CDC stated.
Unseen suffering
The lupus warrior said the most painful part of her experience was not only the disease itself, but the feeling of suffering invisibly.
“There were times I felt completely helpless. I was in pain, getting weaker, emotionally drained, and nobody understood what was happening to me,” she said.
Saturday PUNCH learnt that in the years before her diagnosis, Emengo underwent treatments and procedures that should never have happened.
“I had surgery done on my arm in error. At one point, I received over 35 injections on my scalp, face, and hands. They left dents on my body that I still carry today. All those things were not meant to be,” she told our correspondent.
Although the diagnosis of lumpus in Germany brought some relief, it also came with heartbreak because by then, the disease had already altered her life permanently, affecting her skin, joints, hair, strength, and emotional wellbeing.
She developed scarring alopecia that permanently left nearly half of her scalp bald and painfully sore. She also battled severe joint pain, unexplained fevers, chronic weakness, and overwhelming exhaustion.
“There was a time I couldn’t even walk. Sometimes, I still feel like my body is failing me in every way,” Emengo said.
“And yet, one of the cruelest realities of lupus is that many patients do not look sick. That is the thing with lupus.
“Some of us look like nothing is wrong while we are suffering deeply inside. Others carry visible scars and injuries on their faces and bodies. But the pain is real either way,” she said.
According to her, the emotional burden of lupus has often been just as devastating as the physical symptoms.
“And because of everything lupus has taken from me, I have become more withdrawn,” Emengo admitted quietly.
“There are days I feel very sick and cannot even explain how I feel. It is like living in a body you no longer fully trust.”
But amid the pain and uncertainty, Emengo found purpose. Rather than allow lupus to silence her, she decided to become a voice for others silently battling the disease.
She went on to establish the Mablevi Lupus Foundation, a patient-led organisation dedicated to lupus awareness, advocacy, patient support, and improving access to care across Nigeria and Africa.
Through awareness campaigns, support programmes, the Run for Lupus and Dance for Lupus initiatives, and collaborations with the Summit for Lupus initiative, Emengo is a strong advocate for people living with autoimmune diseases.
Her mission is deeply personal because she understands firsthand what many patients endure: delayed diagnosis, misinformation, isolation, financial hardship, and the painful feeling of being forgotten.
“No one should have to go through what I went through just to get diagnosed,” Emengo said.
Today, she remains passionate about connecting lived experiences with research, healthcare innovation, policy reforms, and public education so that lupus patients can receive earlier diagnoses, proper treatment, and dignity in care.
However, her biggest dream extends beyond awareness campaigns. She hopes to establish Africa’s first dedicated Lupus Centre in Nigeria, a multidisciplinary facility focused on clinical care, research, education, counselling, advocacy, and comprehensive patient support.
For Emengo, the vision goes far beyond buildings or medical facilities; it is about saving lives. It is about ensuring that another young woman does not spend years being misdiagnosed while her body quietly deteriorates. It is about creating a future where lupus patients across Africa are finally seen, heard, researched, properly diagnosed, and supported.
Emengo’s story is far from isolated. According to the College of Medicine, University of Ibadan, Oyo State, over 100,000 lupus cases are diagnosed annually in Nigeria.
Behind many of these cases are people suffering silently, with few understanding the depth of their pain, emotional trauma, and neglect, underscoring the urgent need for greater awareness, support, and improved healthcare for lupus warriors, particularly women.
Although her scars tell a story of suffering, her voice speaks of courage, resilience, advocacy, and hope for many others living with the condition.
‘Lupus is one of the most difficult journeys of my life’
Precious Otiora is another lupus survivor. Living with the autoimmune diseases has been one of the most difficult journeys of her life.
Otiora, who was diagnosed around 2020 during the COVID-19 lockdown, said life since then has felt like a roller coaster filled with uncertainty, pain, exhaustion, flare-ups, and emotional battles many people never get to see.
“Living with lupus and multiple autoimmune diseases has been one of the most difficult journeys of my life,” she said sadly.
Otiora explained that one of the most painful realities of lupus is that it is largely invisible.
“People often assume you are okay because you look fine on the outside, without realising the pain and struggles happening internally. Lupus affects not only the body but also mental health.
“Depression, anxiety, isolation, and emotional exhaustion are very real for many people living with chronic illnesses, which is why mental health awareness and support are so important.
“As an advocate and founder of the Beleaf Autoimmune Support Foundation, I have learned that people often expect patient advocates to always be strong, but the truth is that we are human too.
“Sometimes we are tired, overwhelmed, and in need of support ourselves. Thankfully, I have been blessed with an amazing support system and organisations like Mablevi Lupus Foundation, which continue to create safe spaces, support lupus warriors, and remind patients that they are not alone in their journey,” she said.
Otiora expressed hope that more people would come to understand that invisible illnesses are real and deserving of compassion, not only during Lupus Awareness Month and Mental Health Awareness Month in May, but throughout the year.
She urged the public not to judge people by appearances, noting that many individuals are silently battling illnesses others cannot see.
“I also hope governments become more involved in autoimmune disease awareness by investing in improved healthcare support, mental health resources, and awareness programmes, while also establishing dedicated lupus centres where patients can access specialised care, counselling, education, and support in one safe space,” Otiora appealed.
According to her, despite the hardships, lupus has also taught her important life lessons.
“It has taught me resilience, strength, compassion, and the importance of hope. My story is not just about illness; it is about surviving, advocating, and reminding others that they are not alone,” she added.
The silent suffering
According to the College of Medicine, University of Ibadan, lupus remains a significant health challenge in Nigeria, with over 100,000 cases diagnosed annually.
From chronic fatigue and painful flare-ups to mental health struggles and the burden of appearing “healthy” while suffering internally, lupus affects virtually every aspect of a patient’s life.
For more than five million people worldwide, lupus is more than just a medical condition; it is a daily battle fought quietly within the body.
Often misunderstood and difficult to diagnose, lupus is a chronic autoimmune disease in which the immune system mistakenly attacks healthy tissues and organs, affecting the skin, joints, kidneys, brain, heart, and lungs.
According to the United States Centres for Disease Control and Prevention, lupus has no known cure, and its symptoms can range from mild to life-threatening.
Medical experts also noted that the disease is particularly difficult to manage because no two patients experience it the same way, and there is currently no cure targeting the root cause of the condition.
“Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments,” the Mayo Clinic noted.
Beyond the physical pain, experts said many patients also battle emotional isolation, stigma, disbelief, and misunderstanding from society.
Saturday PUNCH gathered from interviews with survivors that lupus often becomes a painful test of endurance and the courage to keep fighting despite living in a body constantly at war with itself.
The US Office on Women’s Health described lupus as a chronic autoimmune disease that affects more women than men.
“If you have lupus, your risk is higher for other health problems that are common in women, such as heart disease and osteoporosis,” it stated.
According to the Lupus Foundation of America, about 1.5 million Americans and at least five million people worldwide live with a form of lupus, with the disease affecting mostly women of childbearing age.
“However, men, children, and teenagers develop lupus too. But 90 per cent of people living with lupus are women. Most people with lupus develop the disease between the ages of 15 and 44.
“People with lupus can experience significant symptoms, such as pain, extreme fatigue, hair loss, cognitive issues, and physical impairments that affect every facet of their lives.
“Many suffer from cardiovascular disease, strokes, disfiguring rashes, and painful joints. For others, there may be no visible symptoms,” the foundation stated.
Need for better management, treatment options
On its part, the World Lupus Federation released findings from a global survey highlighting the life-altering impact of lupus, the daily struggles faced by patients, and the urgent need for better support systems.
According to the federation, nearly half (43 per cent) of respondents in a recent poll said their greatest concerns were physical inactivity and social isolation caused by the debilitating effects of lupus.
The Twitter poll and survey, conducted by 12 patient groups across nine countries with 2,048 votes cast, also revealed that nearly half (47 per cent) of participants believed the impact of lupus on daily living was poorly understood by physicians, while almost one-third (30 per cent) said the emotional toll of the disease was largely misunderstood.
Although the federation acknowledged that social media polls are not statistically representative of reality, it noted that the findings still offered valuable insight into the frustrations and unmet needs of lupus patients worldwide.
According to the body, nearly half of the respondents expressed a desire for better disease management and improved treatment options through their healthcare providers.
It further noted that only one treatment developed specifically for lupus has received regulatory approval since the 1950s.
As part of efforts to create more awareness, the “Lupus Knows No Boundaries e-Report,” developed through a collaboration between the World Lupus Federation and GlaxoSmithKline for World Lupus Day, featured firsthand experiences from lupus patients, advocates, and healthcare providers, highlighting the ongoing physical and emotional challenges faced by people living with the incurable disease.
In the report, Shannon Boxx, a member of the United States women’s national soccer team who won three Olympic gold medals before retiring in 2015, recounted her ordeal.
Like many others, she silently carried the burden of a lupus diagnosis throughout most of her career, with no one fully aware of what she was going through.
“I decided to speak publicly about lupus because I was tired of hiding it. I was at a point in my career where I knew I probably wasn’t going to play much longer, and I felt I had a real responsibility, being in the public eye, to talk about lupus and create more awareness,” Boxx said.
‘Lupus attacked my kidneys’
A lupus survivor, Asma’u Abba, told Saturday PUNCH that for more than a decade, she has lived through pain, hospital visits, medications, and uncertainty.
Yet, she remained resilient, believing she would get better while calling for stronger government support and greater intervention for lupus patients.
“I was diagnosed with lupus in 2014 and have been on medications since then, but Alhamdulillah, the fight is still on, and we hope to fight till the end,” she said.
Like many lupus patients, Asma’u’s journey has been marked by physical and emotional challenges.
For her, one of the most frightening moments came years after her diagnosis, when the disease began attacking her kidneys.
“Lupus attacked my kidneys from late 2019 to early 2020,” she recalled.
Saturday PUNCH reports that kidney involvement, medically known as lupus nephritis, is one of the most serious complications of lupus and can become life-threatening if not properly managed.
But amid the fear and uncertainty, Asma’u found hope in proper medical care and held strong to God by faith.
“With the grace of God, I got a good nephrologist who treated me,” she said.
Since then, Asma’u has remained disciplined with her treatment, attending medical check-ups every three months and ensuring she never misses her medications.
Despite the lifelong nature of lupus and the daily realities of living with the chronic illness, Asma’u continues to live with courage and optimism.
Like many lupus warriors across Nigeria, she hopes for greater awareness, improved treatment options, and ultimately, a cure.
‘You are not imagining your pain’
Similarly, Rahama Baloni told Saturday PUNCH that when she began experiencing strange symptoms years ago, she knew something was wrong with her body.
But like many women battling chronic illness, her pain was repeatedly dismissed, misunderstood, and misdiagnosed.
Doctors treated the symptoms without understanding the root cause, while her questions remained unanswered.
The exhaustion, pain, and uncertainty gradually became part of her daily reality.
Then, in 2015, after years of confusion and medical frustration, she finally received the diagnosis she had long sought.
For Baloni, the diagnosis was both devastating and awakening.
“That experience changed the entire trajectory of my life,” she said.
In 2016, barely a year after her diagnosis, Baloni founded the Lupus Advocacy Centre, an organisation dedicated to creating awareness, supporting patients, and amplifying conversations around autoimmune diseases in Nigeria and across Africa.
Her mission was born directly from the pain of not being believed, not being diagnosed early enough, and navigating illness alone within a healthcare system that often lacks the tools and awareness needed to identify lupus quickly.
Today, Baloni is also developing Saroni Health, a lupus symptom-tracking mobile application expected to launch this year.
“The platform is designed to help patients monitor symptoms, understand flare patterns, and improve communication with healthcare providers,” she explained.
According to her, “Technology and patient-centred innovation are critical to closing the dangerous gaps that still exist in lupus care across Africa because I refuse to let another woman go through what I went through alone.”
Baloni believes one of the biggest challenges facing lupus patients in Africa is invisibility.
As the world marked World Lupus Day, Baloni issued a passionate appeal to Nigerians, policymakers, researchers, and healthcare professionals to take the disease more seriously.
“My message to Nigerians is that lupus is real, and it is stealing years from the lives of women who deserve better,” she said.
For many women living with lupus, the heaviest burden is often not just the disease itself but the constant struggle to prove that their suffering is real.
She also called on governments, researchers, and health institutions to ensure Africa is no longer excluded from global conversations on lupus research, treatment, and policy development.
Why lupus is often misdiagnosed
A professor of Medicine and Consultant Rheumatologist at Lagos State University Teaching Hospital, Femi Adelowo, said lupus is a condition many doctors may not be familiar with, but one that is managed by specialists known as rheumatologists.
While the exact cause of lupus remains unknown, he said several predisposing factors have been identified, including genetic susceptibility, environmental triggers such as sunlight, infections, certain drugs, and abnormalities in the immune system.
“We honestly do not know the exact cause, but there are various hypotheses and theories. Certain suggestions have been made,” he said.
The don explained that risk factors for the autoimmune disease include race, particularly among Black and Hispanic populations, family history, female gender, contraceptive use, excessive exposure to sunlight, and certain cosmetics.
Another Consultant Rheumatologist at the Lagos State University Teaching Hospital, Dr Hakeem Olaosebikan, said lupus often mimics other illnesses such as infections and cancers, leading to late diagnosis and frequent misdiagnosis.
“Late diagnosis means the disease is already advanced, and organ damage may have occurred. Organ damage in lupus is rarely reversible, and wrong diagnosis means wrong treatment, which may lead to more complications,” he said.
Olaosebikan, who is also a lecturer at the Lagos State University College of Medicine, added that common symptoms include recurrent malaria-typhoid-like illnesses, progressive fatigue, joint pain, painful swelling of joints, and low blood levels.
Speaking on diagnosis, the Centres for Disease Control and Prevention said lupus is difficult to diagnose because its symptoms are often mistaken for those of other diseases, noting that rheumatologists are specially trained to diagnose and manage the condition.
The CDC added that lupus treatment mainly involves medications that suppress the immune system, including hydroxychloroquine, corticosteroids such as prednisone, and biologic drugs like belimumab and rituximab.
Suppression of the immune system
A Consultant Public Health Physician at University of Ilorin Teaching Hospital, Prof Tanimola Akande, while describing lupus as a chronic disease, noted that patients with the condition often experience severe pain, yet there is currently no specific cure for the condition.
Akande, who is also an epidemiologist, said treatment mainly focuses on managing symptoms rather than addressing the root cause.
“Yes. The immune system can also be suppressed to reduce the effects, but that is not about treating the real cause.
“The best people to answer this are experts in internal medicine who manage such patients regularly. Lupus patients often experience disturbing pain. But I cannot comment on the fatality, particularly in this environment. It is a chronic disease,” he added.
In addition to daily medications, a Consultant Dermatologist at Lagos University Teaching Hospital, Erere Otrofanowei, advised lupus patients to avoid ultraviolet light, wear light-coloured long-sleeved clothing, and regularly use Sun Protection Factor creams.
He said such precautionary measures could help prevent worsening symptoms.
While there is still no cure for lupus, Otrofanowei noted that research efforts are ongoing.
“By cure, we mean a magic bullet drug that you can take, and that is it, no more doctor’s visits or medications.
“However, lupus can be properly managed if diagnosis is made early and patients adhere strictly to their medications and clinic appointments.
Improved awareness way out
The World Lupus Federation said public awareness about lupus remains very low, contributing to widespread misunderstanding and misconceptions about the disease.
“We are calling for everyone to unite and take action on behalf of those affected by lupus,” said the President and Chief Executive Officer of the Lupus Foundation of America, Sandra Raymond.
“By shining a light on lupus, we can ensure that friends and family, healthcare professionals, employers, government officials, health insurers, and pharmaceutical companies are aware and informed about the many challenges people living with lupus face,” she added.
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