This year’s World Multiple Sclerosis Day, falling on May 30 will raise awareness of the chronic neurological condition by focusing on its often common, invisible symptoms.
The theme ‘visibility’ will help draw attention to the symptoms experienced by over 25,600 Australians living with multiple sclerosis (MS), including severe pain, walking difficulties, debilitating fatigue, partial blindness and thinking and memory problems.
Chief Executive Officer of MS Australia Deidre Mackechnie says the 2019 World MS Day theme is incredibly important for awareness raising and has a dual purpose, spotlighting the condition’s typically hidden, unseen but common invisible symptoms, a big part of living with MS.
“People with MS often hear, “but you look so well!” when in reality, they are experiencing severe invisible or hidden symptoms.”
Ms MacKechnie says World MS Day also aims to raise awareness of MS by helping elevate the visibility of MS onto the national and global political, social and economic agenda.
“Whilst many of us know someone who lives with MS, what is not so well known are key facts and figures such as, the condition is most commonly diagnosed between the ages of 20 and 40 and 75 percent of those diagnosed are women.
“The recent and ongoing global coverage of US actress Selma Blair’s experience living with MS has raised enormous awareness and increased the visibility of the condition, including in this country, for which MS Australia is very grateful,” she says.
Ms MacKechnie acknowledges the remarkable progress that has been made in the MS field.
“Over the last 10-15 years there has been enormous progress in the MS space and the prognosis for someone diagnosed now is vastly different.
“Currently they would expect to live really well for many years.
“That incredible progress of the last decade provides us with a springboard to accelerate research into ways to stop the disease (i.e. halt disease progression – ‘stop’ is used rather than ‘cure’), prevention and the ‘holy grail’ – repair of the damaged nerves in those that already have the disease.
“We can now see that it is within the grasp of this generation of political leaders and researchers for MS to be stopped.
“There is a genuine belief that in the next decade or so we will be able to stop MS, which is really exciting for the MS community.
“The light at the end of the MS tunnel is getting bigger and brighter.”
But she says more investment in research is required.
“There needs to be a greater investment in research (including from the Medical Research Future Fund) and expansion of clinical trials.”
You can get involved in World MS Day 2019 online and on social media, hold or attend events, share experiences of invisible symptoms, lobby politicians to both make positive changes for people affected by MS and boost the visibility of MS, and use and share the World MS Day tools.
“The global hashtag is #MyInvisibleMS so join the conversation and help us raise awareness,” Ms McKechnie says.
For more details on World MS Day 2019 visit MS Australia’s website or click here.