World MS Day
WHAT MS MEANS TO ME
World MS Day is officially marked on 30 May, with events happening throughout May and June. It brings the global MS community together to share stories, raise awareness and campaign with everyone affected by multiple sclerosis (MS).
Did you know there are 2.8 million people living with MS around the globe? In countries with the highest prevalence, as many as 1 in every 300 people have MS.
It’s important to be aware some groups of the population are disproportionally affected by MS (females and young adults) and ensure that this is accounted for as part of healthcare and support systems.
In the spirit of global solidarity and sharing stories to raise awareness, Pathways to Care’s Emma shares a glimpse into her connection to MS through the experience of having a family member living with MS and how it affected her.
“World MS Day is a day very close to my heart. By the time I was born my uncle had been living with MS for many years. He was 35 when he was diagnosed and passed away aged 66.
“I don’t have memories of him out of a wheelchair, or of him working as an accountant at an accounting firm. I will never forget being told his biggest fear was being looked down on, and being in a wheelchair he felt this somehow reduced his intellect. He felt people would assume that because he had limited ability to move his body and speak, he couldn’t be an intelligent human at the same time.
In a way, he lost his connections to people around him due to this barrier people had in their minds, that he couldn’t hold a conversation.
“World MS Day is so important to raise awareness of the disease and the theme running across World MS Days in 2020-2023 is ‘connections’. Advocating for better service, celebrating support networks and self-care is something that wouldn’t have been at the front of people’s minds when my uncle was first diagnosed in the 1970s.
“These connections were really what my uncle feared losing. The more conversations we have the better off everyone is when it comes to our future.”
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Watch the following video ‘Not Alone’ which raises awareness about the challenges of MS and celebrates MS support networks across the globe.