As thousands of Nigerians battle the invisible torment of lupus, survivors are raising a unified voice calling on the Nigerian government and stakeholders in healthcare to subsidize life-saving drugs, expand access to specialized care, and end the stigma that isolates warriors from society.
Lupus is an autoimmune disease that turns the body’s immune system against its own organs, inflaming joints, skin, kidneys, heart, and lungs.
Speaking during an awareness and endowment program organized by Lupus Remedy Global (LUREG) Support Foundation, Sanusi Fahusat Olubukola, the Founder and Director, explained the plights of lupus warriors. She revealed that monthly medication costs N300,000 for adults and N150,000 for children, forcing many to choose between treatment and survival.
“Living with lupus costs a minimum of N150,000 monthly for children and N300,000 for adults. Prices that force many to skip life-saving drugs,” Olubukola lamented. “Most lupus warriors cannot work regular jobs because flares strike unpredictably, causing job loss. Even our children miss school. We are Nigerians and we want the world to hear us.”
She added that lupus warriors have embraced the costly reality of their condition while clinging to hope beyond the depression, yet persistent stigma demands urgent federal attention and broader societal understanding of the disease’s unpredictable toll.
Sharing her experience as a lupus survivor, Sanusi highlighted the high level of misconception and lack of awareness among parents and doctors in managing this invisible disability.
“We urge the community, especially the federal government, to raise an alert on lupus. Society must understand its unpredictability: we may stand today but collapse tomorrow, unable to queue at BRT stops, endure sunlight, eat ordinary food, or survive without organic diets and consistent medication,” she stressed.
She also called on state and federal governments to establish diagnostic centers in Nigeria, eliminating the unaffordable and out-of-pocket burden of seeking tests abroad.
Dr. Olufemi Adelowo, Consultant Rheumatologist at Lagos State Teaching Hospital, explained that lupus is often misdiagnosed as malaria or typhoid, presenting with fever, weight loss, joint pain, fatigue, rashes, hair loss, anemia requiring repeated transfusions, kidney inflammation, or even seizures in children.
“Lupus can manifest in countless ways,” he said. “We must dispel myths of spiritual attacks, increase awareness among doctors and the public, and reduce stigma through education.”
Dr. Adelowo emphasized the critical need for early diagnosis. “The sooner lupus is detected, the better it can be managed. Delays cause irreversible multi-organ damage.”
He also highlighted Nigeria’s rheumatologist shortage. “We trained nearly 60 specialists, but 20 have emigrated due to ‘japa.’ With training once centralized at Lagos State University Teaching Hospital, coverage across the six zones is now severely limited. While the government is making efforts, we urgently need more training, drug availability, and research funding to support lupus warriors.”
Speaking at the program, Adenike Oyetunde Lawal, General Manager of Lagos State Office for Disability Affairs, addressed the deep-rooted stigma surrounding lupus and called for greater empathy.
“Stigmatization reflects a lack of humanity, and awareness is the key to fostering empathy,” she said. “Everyone, especially those with disabilities, deserves to be treated with dignity. Wear empathy like a sleeve. Even if you don’t live with lupus, strive to understand its realities.”
She noted that while laws exist to combat discrimination, stigma remains a global human issue, not just a Nigerian one. “As we unmask lupus, let us remember that every person can choose to be humane, regardless of understanding the full reality.”