Australia's leading Multiple Sclerosis experts will gather today to discuss the latest research findings around the incurable and often invisible disease that is quietly on the rise in Australia.
Supporting the global World MS Day theme My Invisible MS, a national symposium in Newcastle will highlight the likely causes of MS, the latest advances and promising research updates, including:
• Findings from world-first Australian trials of the robotic exoskeleton helping people with mobility loss to walk again;
• Practical strategies to improve memory, which can help people thrive at work; and
• Better ways to manage MS fatigue.
As well as hosting the symposium, MS Limited will launch the MS Sisterhood, a network of young women with MS who want greater public understanding of the symptoms they secretly carry around with them every day.
Melbourne-based 'MS Sisters', Amanda Campbell and Rania Aboujaber, are among the women building successful careers while secretly battling invisible symptoms such as numbness, blurred vision, bad balance, brain fog and fatigue.
They want all women with MS to join the #MSSisterhood on social media to share their experiences and support each other.
Multiple Sclerosis is a disease that attacks the brain, spine and optic nerves, affecting more than 25,000 Australians. With these numbers rising, researchers are searching not only for a cure but also for treatments that will help people live well with the disease.
Symposium keynote speaker Prof Jeannette Lechner-Scott from John Hunter Hospital cares for more than 1,000 Newcastle MS patients. She said women diagnosed with MS outnumbered men by three to one.
"Prevalence of MS in Newcastle has risen significantly over the preceding decade. There has been a 53% increase in female predominance since 1996, resulting in a new diagnosis three times more likely in women".
"There is something in women that makes them more prone to MS," Prof Lechner-Scott said. "To really do the best by young women who want to become mothers, who want to continue to work, we need to give them the best chance, and to do that, we need more research and tailored treatments."
MS Limited CEO John Blewonski said there were many important ways the community could support people with MS and the best place to start was by heading to the website, ms.org.au
"With the rise of MS in Australia we need to support people living with the disease more and more, and the community can play a significant role in that," Mr Blewonski said. "Local residents can get behind the cause by donating at any time."
Question: Can you tell us about the MS Sisterhood?
Amanda Campbell: With women diagnosed with Multiple Sclerosis (MS) outstripping men by three to one, this World MS Day (May 30) Multiple Sclerosis Limited has launched the MS Sisterhood, a network of young women who want better community understanding of this challenging disease. Supporting World MS Day's global theme of My Invisible MS, the MS Sisterhood has released YouTube videos of themselves talking openly about their experiences for the first time, using the hashtag #MSsisterhood. To the outside world we may look fabulous but all the while we are secretly battling invisible enemies such as numbness, blurred vision, bad balance, brain fog and fatigue.
Question: When were you diagnosed with MS?
Amanda Campbell: When I was 24 years old I was diagnosed with MS in 2004.
Question: Can you talk us through your MS journey leading up to that diagnoses?
Amanda Campbell: When I was young I was always a motivated, happy driven girl. I was working in the fashion industry a fast paced career that I loved.
When I was in my teens sometimes I would experience pins and needles down my left body, but at age 24, it had turned into weakness as well.
My GP ordered an MRI and a neurologist confirmed that I had multiple lesions in my brain and that I had MS.
Question: How does MS affect you on a daily basis, currently?
Amanda Campbell: At Age 24 I had minimal symptoms that would often be years apart. At age 29 I had an unexpected big relapse that paralysed the entire left had side of my body. It took a slow cruel 10 days to lose mobility on the entire left side of my body. Washing and feeding myself became the most difficult tasks of my day and I was confined to a wheelchair. I was sent to rehabilitation where I would live for two months.
Question: Are you able to manage these symptoms with medication?
Amanda Campbell: I take a balanced approach in my health program and that has worked really well for me. I have tried many different medications as they have become available and I combine that with a positive attitude to nourish my mindset daily, optimal nutrition and a movement program.
Question: What other methods do you use to manage your symptoms?
Amanda Campbell: When I was living in rehabilitation I had to learn how to walk again, I had the help of Neuro-physiotherapists and a Kinesiologist. Again, taking a balanced approach really worked well for me. I was faced with never walking again at age 29, but after 6 weeks I walked and ran in my sessions. My results inspired me so much it would lead to a career change and to the life I am so grateful to live now. Today I am a Sports Kinesiologist, MS Ambassador and Speaker. I opened up my private practice Bend Like Bamboo in 2013 to share the knowledge and the lessons I have learned along the way to others. I believe that flexibility builds resilience. Studying the mind-body connection and becoming a practitioner has helped me to master flexibility in my mindset which I believe impacts everything that matters: your body's ability to repair, how happy and resilient you are and how connected you feel. The best advice I give to anyone going through a recovery or setback is to give your body the best environment to repair and thrive.
Question: How difficult is it to live with the invisible symptoms associated with MS?
Amanda Campbell: It can be really difficult. At age 29 my lack of mobility was very visible. But some of my other symptoms such as bladder frequency, digestive pain and fatigue and not. It can lead to stress, sometimes I am very hard on myself as I want to belong at work, in my community doing what everyone can do. On the harder days you can feel really alone and misunderstood, if you are not careful and kind to yourself.
Question: What message do you hope to spread for World MS Day?
Amanda Campbell: You're never alone. Contact your local MS organisation I had people stand with me when I couldn't stand. That is what we are all doing for people living with MS on World MS Day in May.
I believe that a supportive environment is also a healing one.
Interview by Brooke Hunter