Windhoek, June 2 — 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 3000 people in the world. It is 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. 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,” says Dr Kgothatso Motumi, Head of Public Policy and Market Access, Roche.
The theme for World MS Day is 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 are also getting involved to further raise awareness, challenge social barriers and stigma, celebrate support networks and champion self-care.
“We’re aiming to shine a spotlight on awareness and “What MS is?” by highlighting the symptoms of MS and encourage people around Namibia to speak out about theirs”, says Bianca Özcan, Founder and Projects Manager, Multiple Sclerosis Namibia.
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 analyze 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 Organizations 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”, added Bianca.
“We are proudly committed to creating awareness of 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 of the signs and symptoms of MS and reducing the stigma associated with MS. We are proud to walk the steps with all those living with MS,” concludes Dr Kgothatso Motumi.