The appeal came during a joint advocacy and sensitisation programme organised by The Nerve of My Multiple Sclerosis in collaboration with the Onigbongbo Local Council Development Area in Ikeja, Lagos State. The event brought together patients, caregivers, health professionals, and community leaders to discuss gaps in diagnosis, treatment access, and social support systems.
According to organisers, the initiative was designed not only to raise awareness but also to confront the stigma that continues to surround neurological conditions in many communities. A statement signed by the group’s founder, Mrs Nathalie Busari, noted that the programme featured both in-person participation and virtual testimonies, with four survivors attending physically while nine others joined online to share their lived experiences.
“It affects every part of your body” — patients describe daily struggle
Speaking at the event, Ms Oyefunso Orenuga, a Nigerian representative of the organisation and PhD student in Community Health Nursing at the University of Ibadan, said her research is focused on building culturally relevant support systems for patients living with the condition.
Her work, she explained, is aimed at improving both coping mechanisms and quality of life for patients navigating a disease that is often misunderstood and difficult to diagnose.
“My interest is in developing a culturally tailored psychoeducational programme that will help MS survivors cope and live a better quality of life. Multiple sclerosis can pull you down. It affects you emotionally and can affect every part of your body,” she said.
She stressed that treatment goes far beyond medication, arguing that emotional and social support play a central role in disease management.
“It is not only drugs that can help you cope. Sometimes you feel fatigued and tired. You need support from family, community, and society to manage the condition effectively,” she added.
Misconceptions and stigma remain widespread
Orenuga also highlighted persistent cultural misconceptions about the illness, noting that some communities still attribute symptoms to spiritual causes or supernatural influences.
“Many people still believe it is spiritual or caused by ‘village people’. We are using culturally relevant tools like proverbs and local expressions to disabuse their minds and encourage them to seek medical help,” she said.
Patients, she added, often face stigma in everyday settings, with some reporting public ridicule due to visible symptoms such as difficulty walking.
“One of the survivors shared how people laughed at her in the market, asking if she was drunk because of how she walked. These experiences can be humiliating, but with awareness and support, patients can live meaningful lives,” she said.
Such experiences, advocates argue, contribute to delayed diagnosis and reluctance to seek care, further worsening outcomes for patients already facing a complex neurological condition.
Late diagnosis and high cost of care raise concern
Medical experts at the event noted that multiple sclerosis is often difficult to diagnose, with confirmation sometimes taking several years. The disease occurs when the immune system mistakenly attacks the central nervous system, damaging nerve fibres and disrupting communication between the brain and body.
Orenuga explained that researchers are still investigating possible causes, including genetic predisposition, environmental factors, viral triggers, and vitamin D deficiency.
“Diagnosis can take between three and five years. The cause is unknown, though factors like genetics, environment, viruses, and vitamin D deficiency are being studied. The condition occurs when the immune system attacks the body, damaging the nerves,” she said.
She also raised concern about the financial burden placed on patients, calling for government support through national health insurance and subsidies for treatment and diagnostics.
“MRI can cost over N400,000, and some medications cost over N1m. Government should provide subsidies and recruit more neurologists because we do not have enough specialists in Nigeria,” she said.
 |
| Members of The Nerve of My Multiple Sclerosis Foundation, Onigbongbo LCDA representatives and MS patients... Photo: The Nerve of my MS Foundation. |
Beyond clinical care, stakeholders emphasised the need for better data collection and formal inclusion of the disease in national health planning.
Bamidele Busari, co-founder of The Nerve of My Multiple Sclerosis, warned that lack of recognition at policy level continues to limit funding and pharmaceutical investment.
“A disease people do not believe exists in Nigeria will not attract investment. We need a register of patients to engage government and pharmaceutical companies and push for reduced drug costs,” he said.
He added that the organisation is working to expand research, education, and financial support systems for affected individuals.
“We want to empower patients to understand their condition and engage healthcare providers better. Support also includes raising funds to assist those who cannot afford treatment,” he said.
Local government response highlights awareness gap
The Vice Chairman of the Onigbongbo Local Council Development Area, Mr Shamsudeen Oloyede, described the programme as an eye-opening experience, noting that many residents remain unfamiliar with the condition.
“This is my first time hearing about this disease in this community. It is important that we continue to sensitise our people so they can understand the symptoms and seek early medical attention,” he said.
He urged residents to prioritise early medical consultation, stressing that timely diagnosis remains critical to managing long-term complications.
“Early detection is key. People should visit hospitals when they notice anything unusual,” he added.
As awareness efforts expand, advocates say the broader goal is to move multiple sclerosis from obscurity into structured national health planning—where diagnosis is faster, treatment is more affordable, and stigma no longer defines the patient experience.