Time Matters in MS: MS Awareness Week Highlights Critical Treatment Window
This Multiple Sclerosis Awareness Week, 15th – 21st September, multiple sclerosis organisations across New Zealand are shining a light on the early symptoms of MS and raising vital funds for community services.
MS is a chronic neurological condition affecting the central nervous system. In MS, the immune system attacks the protective layer of nerve fibres disrupting communication between the brain and body. This leads to a wide range of symptoms.
Early symptoms can include; loss of balance, numbness, pain, tremor, weakness, blurred vision, fatigue, and cognitive changes.
“No two people will experience MS, or the associated symptoms in the same way,” says Multiple Sclerosis New Zealand (MSNZ) National Manager, Amanda Rose. “This often makes spotting the signs and diagnosis difficult. Treating and managing MS is also unique to the person.”
What is known is that Time Matters in MS and there is a critical window of opportunity. Prompt reporting and early access to treatment can make a significant difference in long-term outcomes. Research shows that people who begin treatment within 6 months of their first symptom had a 30% slower rate of disease progression compared to those who started their treatment later.
Jess Brien is one of 5000 New Zealanders with MS. Diagnosed in 2014, Jess was only 21 when she experienced her first MS symptom.
“I was in my final year of drama school, I suddenly lost a lot of vision in my right eye. I remember feeling really scared and alone and thinking this would be the end of my dreams to travel the world.”
Jess vividly remembers this period of her life.
“Thankfully, this was at a time when MSNZ and health professionals had been advocating for better access to disease modifying therapies for people living with MS, and Tysabri had just been funded by Pharmac. I was able to start this treatment early the following year, which was a huge relief, knowing what we know now about the importance of starting treatment within 6 months of diagnosis.”
This Awareness Week MSNZ is proud to be launching a five-part podcast series hosted by Jess. “It has been a real pleasure collaborating with MSNZ to create this 5-part podcast series for MS Awareness Week 2025. I’ve loved getting to connect with other people living with MS, health professionals, and researchers, who kindly shared their stories with me. Everyone is playing a part in making living with MS possible in Aotearoa New Zealand and I’m really grateful for this!”
While numbers of people diagnosed with MS have increased by 67% in the last 20 years, it is still relatively unknown and misunderstood. “I didn’t know anyone who was also living with MS, except for Sarah Potts on Shortland Street! That’s a big reason why I decided to be so open about sharing my realities of living with MS, and help share other patients’ stories on the That’s So Chronic podcast, so that anyone out there who has also been diagnosed doesn’t feel as alone as I did.”
Due to her quick thinking and seeking help Jess got onto treatment quickly. She now has a flourishing career as a freelance performer, podcaster and writer – and she’s achieving her dream of travelling the world.
However, not all MS diagnoses are as simple.
Claire Jewitt pushed for a diagnosis for five years, battling unexplained symptoms, endless medical appointments, referrals, misdiagnoses, and growing anxiety.
“Five years of navigating a health system that often felt more like an obstacle course than a safety net. It was a confusing and isolating time and extremely expensive. By the time I finally received my diagnosis in 2016, I had spent a literal fortune trying to find answers. Not only having time off work, but in private specialists, MRIs, alternative therapies, and countless tests – each appointment felt like a financial and emotional gamble. And all the while, my health was deteriorating in slow, sometimes imperceptible ways that made me question my own sanity. Was I just tired? Was it stress? Was I imagining things?”
Unfortunately, Claire’s story is not uncommon. Diagnosing MS can be complex. While many of the symptoms are more noticeable, but many are invisible. “We commonly hear from people frustrated and distressed with not being heard, struggling to explain unseen symptoms or having them put down to busy lives.”
“It’s not only damaging to your brain and body, but also psychologically. Feeling unheard, unseen and living in limbo. That’s why we’re on a mission to raise the awareness of MS and educate about the symptoms and next steps.”
This MS Awareness Week, MSNZ is calling on New Zealanders to be alert.
“If you’re concerned about changes to your sensations, balance, weakness or visual changes, which aren’t going away, or otherwise explainable, report them to your GP. If they continue, push for a referral to neurology. When it comes to brain health we must protect it.”
When asked about what advice MSNZ can give to people struggling,
“We often recommend keeping a symptom diary, having someone to advocate for or with you, and simply being informed. If you feel like you aren’t being heard, it’s ok to ask for a second opinion.”
Once diagnosed with MS, 18 Regional Societies are on hand across Aotearoa to empower those diagnosed, their families, carers, and whānau. MS Community Advisors deliver tailored support, trusted information, community connection, and advocacy.
Multiple Sclerosis NZ, is the national organisation driving nationwide change for people living with MS.
“We’re advocating hard for better care, faster diagnosis, access to world-class treatments, and a stronger voice for the MS community in shaping policy and the future,” says Rose.
MS Organisations are predominantly community funded.
“Please consider donating to Multiple Sclerosis this Awareness Week. Whether you donate to our Regional Societies to support community-based services, or want to fund national policy change, every dollar delivers life-changing services, enables us to fight for fair treatment access, and amplifies voices across Aotearoa. Together, we’re raising not just funds, but hope, equity, and the standard of care for all affected by MS.”
Please donate: https://fundraise.msnz.org.nz/time-matters