World MS Day advocates unite this year to tackle diagnostic delays head on

Advocates around the globe are coming together this Saturday, May 30, for World MS Day to push for better care, earlier diagnoses, and increased awareness for people living with multiple sclerosis (MS).

Launched in 2009 by the MS International Federation (MSIF), a coalition of MS advocacy groups, the annual event is observed through global campaigns, local events, and community-driven advocacy efforts. This year’s campaign is themed “My MS diagnosis: navigating MS together,” focusing on the challenges many people face in obtaining a timely and accurate diagnosis.

“Too many people with MS face delays in diagnosis because of low MS awareness and limited access to specialist services. This campaign shines a light on those barriers and calls for urgent action to ensure that every person with MS can access the right diagnosis and care,” Lydia Makaroff, PhD, CEO of the MSIF, said on the group’s website.

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MS is a chronic neurological disease that can cause symptoms ranging from mobility and vision problems to fatigue, pain, and cognitive or mental health issues. While available MS therapies can reduce disease activity and slow progression, they are generally most effective when started early.

But getting an early and accurate MS diagnosis can be challenging. There is no single test that can confirm the disease, so clinicians must rely on a combination of neurological exams, imaging scans, laboratory tests, and a patient’s medical history and symptoms.

The criteria for MS diagnosis have been updated frequently, most recently in 2024, to enable faster, more accurate diagnoses. And yet, many patients still wait months or even years before receiving a definitive diagnosis.

This year’s World MS Day theme aims to shine a light on those challenges by sharing the diagnosis experiences of people living with MS and push for continual improvements.

“We are calling for better MS training for healthcare professionals, new research, and clinical advancements in MS diagnosis,” the MSIF said. “Together we are building informed, caring communities and systems that support people diagnosed with MS.”

As in years past, a key feature of this year’s advocacy day is that community members can generate a personalized poster sharing their experiences, this year specifically focusing on diagnosis. The poster can be generated online by answering a few quick questions. Participants also have the option this year to share their responses anonymously with researchers studying barriers to MS diagnosis.

Alongside the global initiative, MS organizations worldwide are hosting local advocacy and fundraising events to mark the day. In the U.S., the National MS Society will be hosting fundraising walks and bike rides nationwide.

In the U.K., MS Trust is running fundraising efforts to support its mission of helping people affected by MS. Another U.K.-based organization, Overcoming MS, is leading a campaign called “MS: A diagnosis, not a destiny,” which aims to empower people with MS to live well after diagnosis.

“Through our MS: A diagnosis, not a destiny campaign, we’re challenging common myths about MS and helping more people understand the role that evidence-informed lifestyle choices can play alongside medical treatment, support and community,” Overcoming MS states on its website.

Elsewhere, the Multiple Sclerosis Society of Ireland is hosting meetups in Arklow and Dublin on May 30, while MS Australia and other MS groups are launching a new video resource called Back on Track designed to support people with MS at all stages of their journey.