Health
World Lupus Day: Stakeholders Seek Improved Care
By Folasade Akpan
Stakeholders, health experts and persons living with lupus have demanded stronger awareness, improved diagnosis, financial assistance and better healthcare services for Nigerians battling the chronic autoimmune disease across communities nationwide.
They made the call on Sunday in Abuja during activities commemorating the 2026 World Lupus Day themed “Make Lupus Visible Together,” organised by the Gift Lupus Foundation with healthcare advocates.
World Lupus Day, observed annually every May 10, raises awareness about lupus, its effects and the challenges confronting patients globally, including delayed diagnosis, treatment difficulties, discrimination, emotional trauma and rising healthcare expenses.
Lupus patient Vivian Martins-Atojoko described her experience with the disease as painful and unpredictable, explaining she initially suffered unexplained body pains, swollen joints and sensitivity to cold before receiving proper diagnosis eventually.
Martins-Atojoko said she was initially treated for rheumatoid arthritis before doctors later confirmed lupus after years of persistent symptoms, worsening health conditions and repeated hospital visits without lasting medical solutions.
She recounted suffering miscarriages and stillbirths, while doctors warned pregnancy could worsen her condition because of medications required for treatment, further compounding the emotional and physical burden associated with lupus management.
“Life with lupus is unpredictable. One minute I am okay and smiling, the next minute I may start feeling very sick with inflammation, kidney problems or severe pain,” Martins-Atojoko said.
She identified the high cost of medications, laboratory investigations and specialist consultations as major challenges affecting lupus patients, forcing many individuals to skip medications regularly because of severe financial difficulties nationwide.
Martins-Atojoko urged government and health insurance providers to establish dedicated lupus clinics and expand insurance coverage to include medications, laboratory investigations and specialist care services for patients nationwide across public hospitals.
Another lupus patient, Nanna Gambo-Yilme, said her symptoms began after the COVID-19 lockdown, starting with breathing difficulties and sudden weakness affecting one side of her body before eventually seeking medical intervention.
Gambo-Yilme said many hospitals lacked adequate knowledge about autoimmune diseases, adding she was advised to seek treatment abroad after unsuccessful consultations locally, but remained unable to afford the enormous medical expenses involved.
“They said autoimmune diseases were not common in Nigeria. I had to learn to survive it myself and tell myself that I would outlive it,” Gambo-Yilme said.
She encouraged other lupus patients not to give up in spite of the pains, stigma and disbelief often associated with invisible illnesses, urging affected individuals to remain hopeful while seeking appropriate treatment and emotional support.
National President of the Association of Public Health Physicians of Nigeria, Dr Terfa Kene, described lupus as an autoimmune disease where the body’s immune system attacks its own tissues and organs internally.
According to Kene, lupus can affect the kidneys, heart, lungs, skin and joints, making diagnosis and treatment difficult because symptoms frequently resemble those associated with several other diseases and health conditions globally.
“The immune system that is supposed to fight infections now attacks the individual’s own cells.
“That is the simplest explanation of lupus,” Kene said while addressing participants during the programme.
Kene explained treatment often involved suppressing the immune system with medications that could equally expose patients to infections, vitamin D deficiency and additional health complications requiring careful monitoring by medical specialists regularly.
He said awareness of lupus remained low among healthcare workers and the public, adding that available data on the disease in Nigeria remained inadequate for effective planning, intervention and improved healthcare policy implementation.
“It is reported that about 58 per cent of people have little or no information about lupus, and many Nigerians still do not understand what the disease is,” Kene said.
Kene emphasised the need for increased public education, improved medical research and stronger healthcare systems capable of supporting early diagnosis, effective treatment and long-term care services for lupus patients across Nigeria effectively.
Founder of Gift Lupus Foundation, Mrs Lovette Ononuga, said she established the organisation in 2019 after losing her sister to lupus complications following years of delayed diagnosis and inadequate medical attention received previously.
Ononuga said her sister lived with lupus for 18 years but remained undiagnosed for 15 years because doctors repeatedly failed to correctly identify the condition in spite of recurring symptoms and severe persistent pains.
“One day she would present with heart problems, another day with lesions or swollen joints, but she was always in pain and constantly fatigued,” Ononuga said while recounting her sister’s prolonged medical struggles.
Ononuga said her sister was eventually diagnosed at a lupus clinic in London, but years of undiagnosed lupus had already caused severe kidney damage that eventually resulted in her death from complications later.
“The disease is incurable, but if detected early, it can be managed and patients can live normal lives,” Ononuga said while advocating stronger awareness campaigns and earlier diagnosis for lupus patients.
She identified poor awareness, delayed diagnosis, inadequate support systems and high treatment costs, patient survival and access to quality healthcare services across Nigeria as major gaps affecting lupus management nationwide.
“I want to see a Nigeria where lupus patients have a chance, where stigma is reduced and where people living with lupus are properly supported by government, hospitals, family and society,” Ononuga said.(NAN)(www.nannews.ng)
Edited by Abiemwense Moru
