Experts seek support for multiple sclerosis patients

Experts and stakeholders are urging the Nigerian government to provide urgent intervention, increase public awareness, and improve access to care for individuals living with multiple sclerosis (MS). The chronic neurological condition is reportedly underdiagnosed across the country, and many still hold misconceptions about its cause.

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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.

This call to action emerged during a joint advocacy and sensitization program organized by The Nerve of My Multiple Sclerosis Foundation in collaboration with the Onigbongbo Local Council Development Area in Lagos. The event aimed to educate residents and combat the stigma surrounding MS. Four survivors attended in person, while nine others joined virtually to share their experiences.

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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.

Ms. Oyefunso Orenuga, a Nigerian representative for the organization and a PhD student in Community Health Nursing, is researching culturally tailored psychoeducational programs to help MS survivors cope. She stressed that beyond medication, patients require robust social and community support. "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 explained.

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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.

Orenuga highlighted that the initiative incorporates indigenous approaches to address misconceptions, such as the belief that MS is spiritual. "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. She also recounted instances of stigma, where survivors are ridiculed in public for symptoms like difficulty walking. The condition, which has no known cure and can take three to five years to diagnose, occurs when the immune system attacks the body's nerves. Experts are investigating factors like genetics, environment, viruses, and vitamin D deficiency.

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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.