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World MS Day - ANU

The COVID-19 pandemic, natural disasters, and other personal stressors have made the past few years a difficult time. For people living with multiple sclerosis (MS), a neurological condition affecting the brain and spinal cord, navigating this time has been even more of a challenge. For many it has been associated with increased loneliness and social isolation.

This World MS day focuses on the importance of ‘connections’, with the MS Connections campaign all about building community connection, self-connection, and connections to quality care and research. Researchers at the Australian National University (ANU) are continually connecting with people living with MS and the MS community to ensure their research is relevant to the lived experience. Together they hope to improve the quality of life for the 25,600 Australians and 2.8 million people worldwide who live with this condition.

You too can connect with our MS research and community by being part of the MS Cohort Study. This study aims to improve the clinical management and overall health of people living with MS, and welcomes people living with and without MS to participate.

Hear from our MS community about what ‘MS connections’ means to them.

Ron and Annie on a recent trip to New Zealand.

“In the 20 years since I was first diagnosed with MS, I have been involved with a number of groups with other people with MS, ranging from painting with watercolours to yoga, via meditation and support groups. I have found it really valuable to be able to connect with others who appreciate the challenges of living with MS, to share my experiences, and to learn from the knowledge of others. While I am lucky to also participate in activities in the broader community and have exceptional support from my friends and family, being part of the broader MS family helps me feel part of the global MS family as well.” - Annie

“Living with and supporting someone who has MS has all the usual demands and strains of providing support to someone going through something that you haven’t experienced yourself.  Nothing can help me to truly understand what it is to live with MS, but it is of great value to be able to join the broader MS community and share the experience of others in the same position. It also helps to learn more about MS from others living with the condition, from other supporters and from researchers.  Anything that you can go through as part of a community, rather than alone, is easier to cope with and is more likely to be done well.” – Ron

Dr Jo Lane is a clinical psychologist and research fellow at the ANU working to improve personalised care in MS.

“World MS day is about bringing the global MS community together to share stories, raise awareness and campaign with everyone affected by MS.

I am part of a large team at the ANU working together to transform healthcare in MS and improve the quality of life of people living with MS. Our research is very collaborative and includes people living with MS, researchers across many disciplines, clinicians, and those impacted by or have an interest in MS.

Being a MS researcher is very rewarding and I am privileged to be a part of the MS community.” - Dr Jo Lane

Professor David Tscharke fights MS in life – and in the lab where he researches new treatment options.

“As a person with MS it is vital that I am connected with excellent medical care and as I have gone through my journey I have found that at significant times through my GP, MS Australia and MS clinic nurses, my neurologist and the infusion team. They have guided my understanding and treatment decisions and delivery. Knowing that I am doing everything possible in terms of treatment is important for my piece of mind. As a researcher with MS my collegial connections are very meaning to me, providing me an opportunity to test ideas about what is happening in MS as well as sharing the research findings, which is my best connection to hope for the future.” - Professr David Tscharke.

Janet lives with MS.

“The symptoms of MS can be so variable and are often invisible to others.  MS can have a big impact your life on so many different levels and others do not always understand what you are experiencing.

I have found that having the opportunity to connect with my peers to be very helpful and rewarding as we understand and support each other through sharing our personal experiences, knowledge gained and hints.

Further, I believe it’s important that the MS community continue to develop and maintain close connections with research and support organisations. Hopefully by working closely together, we can find better ways to live well with this challenging disease.” - Janet

“Human connection is something that's important for all of us. When you live with an invisible and unpredictable disease like MS, remaining connected to friends and family support networks as well as your healthcare team is vital. These connections help transform what can at times be an overwhelming and isolating experience into something that's manageable; it helps remind me that I'm not alone in living with MS - I'm part of a community.” - Angela

Our research community at the ANU are participating in the ‘May 50km’. This event sees them commit to walking or running 50km or more and raising funds to leave MS behind.

People living with and without MS can connect with our MS research and community. For more information go to MS Cohort Study or email ACTMSCohortstudy@anu.edu.au.

By Liz Drummond.