Connecting Africa to drive a unified voice
World MS Day commemorated
World MS Day, officially marked on 30 May, aims to bring the global Multiple Sclerosis (MS) community together by sharing stories, raising awareness, and reducing the stigma for everyone affected by the disease.MS is a chronic, immune-mediated disease of the central nervous system that leads to neurological symptoms and disability, affecting 1 out of every 3 000 people in the world. It a disease that is often misunderstood by both patients and providers, largely because the symptoms often mimic other conditions.
“While it’s the most common non-traumatic cause of neurological disability in young adults, it’s a disease that is often misunderstood by both patients and providers, largely because the symptoms often mimic other conditions,” says Dr Kgothatso Motumi, Head of Public Policy and Market Access, Roche. “MS symptoms can slowly appear or creep up on you suddenly. They can be scary and disorienting – that’s why we need the increased awareness and education of the disease.”
The theme for World MS Day this year was Connections – how building connections for the community and self is important to make people affected by the disease feel less lonely and socially isolated.
Local patient organisation groups also got involved to raise awareness, challenge social barriers and stigma, celebrate support networks and champion self-care.
“We continue to shine a spotlight on awareness and what MS is by highlighting the symptoms of the condition, and encouraging people around Namibia to speak out about theirs,” said Bianca Özcan, Founder and Projects Manager, Multiple Sclerosis Namibia.
Care
Roche is working across Africa to build up MS care from the ground up, starting with identifying data gaps, launching clinical trials to understand how MS affects a typical African patient, and developing data registries to analyse these insights.
Additionally, Roche is working with patient organisations to increase awareness and reduce the stigma.
“With the global theme of #MSConnections, we can reach a bigger achievement as one voice with the support of other African MS organisations by helping us build a connected MS community that advocates about the challenges, i.e., stigma, awareness, resources, and to alert decision-makers about the disease and availability of treatments,” Bianca added.
“We are proudly committed to creating awareness about MS through collaboration with various patient organisations across the region. We believe it is important to speak with a consistent, unified voice in raising awareness on the signs and symptoms of MS and to reduce the stigma associated with MS. We are proud to walk the steps with all those living with MS,” Motumi concluded.
Founded in 2007, Multiple Sclerosis Namibia envisages to support every person with MS in Namibia by being their “voice”, comforting the lonely and isolated, information dissemination, and serving as a connection between health care institutions.
For more information, contact [email protected] or visit the MSNamibia Facebook page.