When Kerry was diagnosed with multiple sclerosis (MS) at age 58, her first reaction was relief – finally, she knew what was causing her mysterious symptoms. But that relief quickly turned to panic. She didn’t know what her future would look like.
“I think my first experience of symptoms was at the gym. I was working harder and harder, and my legs were getting more fatigued. Then one day, on a hike in Victoria, my leg muscles were screaming at me to stop. I’ve never felt that fatigued before in my life. It was totally debilitating.” – Kerry
Today marks World MS Day 2025, an international day of solidarity and hope for the 2.8 million people living with multiple sclerosis worldwide. This year’s global campaign, “My MS Diagnosis,” shines a spotlight on the critical importance of early and accurate diagnosis for everyone living with MS.
The theme resonates deeply here in South Australia and the Northern Territory, where MS Society SA & NT supports more than 3,000 people living with MS.
The Reality of MS Diagnosis in Australia
Despite significant medical advances, people with MS in Australia still wait an average of four years from first symptoms to receiving their diagnosis. This delay can be devastating, as early treatment with disease-modifying therapies can significantly slow progression and reduce future disability.
“The journey to diagnosis remains one of the most challenging aspects of living with MS,” says Shaun Kennedy, Chief Executive Officer of MS Society SA & NT. “Too many people face years of uncertainty, dismissed symptoms, and medical professionals who don’t recognise the early signs of MS.”
Recent data shows that 83% of countries worldwide experience barriers that prevent early MS diagnosis, with the most common obstacle being a lack of awareness about MS symptoms among both the public and healthcare professionals.
The challenge extends beyond diagnosis to ongoing support. New national survey data released today by MS Australia reveals that while 96% of people with MS are interested in making lifestyle changes that could improve their symptoms and quality of life, 73% struggle to identify credible, safe and relevant information about modifiable lifestyle factors such as physical activity, diet, and health supplements.
Kerry’s Journey: A Local Story of Perseverance
Kerry’s experience exemplifies the diagnostic challenges many face. In October 2011, the super-fit former TV makeup artist was climbing a waterfall when her leg muscles began “screaming.” Known as the “Duracell Bunny” for her boundless energy — two hours at the gym daily and ballet classes twice a week — Kerry couldn’t understand what was happening.
“I was so fit,” Kerry recalls. “I thought, my God, what’s going on? The fatigue was just so unbelievable. I started to get sore feet and legs… almost like a buzzing electric current.”
As her symptoms worsened — weakness, nausea from exhaustion, and toe spasms — Kerry consulted numerous doctors. None could provide answers.
“By the end of it, people were starting to make me think it was all in my head. Even my husband started to think like that,” she says.
It wasn’t until April 2015 that Kerry finally received her MS diagnosis at age 58 — three years after her symptoms began.
Kerry’s story, while challenging, demonstrates the resilience of people living with MS and highlights why organisations like MS Society SA & NT are crucial in providing support throughout the diagnostic journey and beyond. Like many people living with MS, she wanted reliable information to help manage her condition through informed lifestyle choices.
Addressing the Information Gap
In direct response to community needs, MS Australia today launched “Living Well with MS,” a comprehensive, evidence-based guide developed in collaboration with neurologists, researchers, MS nurses, service providers, and people living with MS. The resource addresses the critical gap identified in their national survey, with 98% of respondents saying they would be more likely to make lifestyle changes if they had access to an easy-to-follow, MS-specific guide based on the latest evidence.
The guide covers 11 modifiable lifestyle factors, including physical activity, nutrition, sleep and vitamin D, offering strategies grounded in the best available research, complemented by expert advice and practical suggestions from lived experience.
You can show your support this World MS Day by donating to the MS Society SA & NT here or you can ‘Go Red for MS’ by wearing red.
MS Society SA & NT: Supporting Our Community
As the only MS-specific organisation serving South Australia and the Northern Territory, MS Society SA & NT provides comprehensive support to help people like Kerry navigate their MS journey. Our services include:
Specialist Care and Support:
- MS nursing care for over 1,000 people annually, providing symptom management and treatment education
- Physiotherapy services supporting 496 clients with over 3,000 hours of care
- Occupational therapy assistance for 128 clients with daily living activities and home modifications
- Support coordination services for 270 people.
Education and Community:
- 17 wellbeing education programs delivered to 485 people, covering topics from diet and exercise to stress management and employment
- Support for 74 newly diagnosed individuals each year
- MS Family Fun Day connecting 423 community members
- Comprehensive outreach programs across regional SA and NT.
Our New Wellness Centre: In 2024, we opened our purpose-built Wellness Centre in Kilkenny, designed specifically with input from people living with MS. This state-of-the-art facility features curved walls, wide hallways, and respite areas, along with telehealth technology to connect with clients in rural and remote areas.
The Global MS Picture
World MS Day, coordinated by the MS International Federation (MSIF), brings together the global MS community to share stories, raise awareness, and advocate for better outcomes. Key statistics highlight the scope of the challenge:
- More than 2.8 million people live with MS worldwide
- Someone is diagnosed with MS every 5 minutes globally
- MS affects twice as many women as men
- At least 30,000 children under 18 live with MS globally
- In Australia alone, more than 33,300 people live with MS
Looking Forward: The Future of MS Care
The “My MS Diagnosis” campaign advocates for several critical improvements that align with the evidence-based approach reflected in new resources like “Living Well with MS”:
- Better Training and Awareness: Increased MS education for healthcare professionals to improve recognition of early symptoms and speed up referrals to specialists.
- Improved Access: Enhanced access to specialist neurology services and diagnostic tools, particularly important for our regional communities across SA and NT.
- Earlier Intervention: Implementation of national MS guidelines aligned with international standards for diagnostic criteria and treatment protocols.
- Community Support: Building informed, caring communities that support people through their diagnosis journey and beyond, with access to credible, evidence-based information about lifestyle factors that can influence their MS journey.
How You Can Get Involved
World MS Day is an opportunity for everyone to show solidarity with people living with MS:
- Share Stories: Help raise awareness by sharing MS stories and information on social media using #WorldMSDay and #MyMSDiagnosis
- Learn More: Educate yourself about MS symptoms and support people in your community who may be experiencing unexplained neurological symptoms. Access evidence-based resources like “Living Well with MS” to better understand how lifestyle factors can support MS management.
- Support Services: Consider supporting organisations like MS Society SA & NT that provide direct services to people living with MS
- Advocate: Contact local representatives about the importance of accessible specialist healthcare and research funding
A Message of Hope
While the journey to MS diagnosis can be challenging, stories like Kerry’s demonstrate the strength of the MS community and the importance of specialised support services. With new evidence-based resources and continued advocacy for earlier diagnosis, there is growing hope for improved outcomes.
“Every person’s MS journey is unique, but no one should face it alone,” says Kennedy. “Through World MS Day, we’re reminded that together, we can improve outcomes, provide better support, and ultimately change the trajectory of MS in our community.”
As we mark World MS Day 2025, MS Society SA & NT reaffirms its commitment to being the trusted source of advice, connection, and support for people living with MS at all stages of their journey.
For more information about MS Society SA & NT services or to get involved in our work, contact our team via msassist@ms.asn.au or call (08) 7002 6500.
If you or someone you know is experiencing possible MS symptoms, speak with your GP about a referral to a neurologist.
To access “Living Well with MS” and other evidence-based resources, visit the MS Australia website.
Media Enquiries:
P: 08 87002 6500
E: communication@ms.asn.au