Navigating Life with Multiple Sclerosis

World MS Day, celebrated on May 30th, is a day of global solidarity and collective action for everyone affected by Multiple Sclerosis (MS). This year's theme, "My MS Diagnosis," focuses on the importance of early and accurate diagnosis.

What is MS?

Multiple sclerosis (MS) is one of the most common diseases of the central nervous system (brain and spinal cord). Today, there are more than 2.8 million people around the world have MS. MS is an inflammatory demyelinating condition. It is caused by damage to myelin – a fatty material that insulates nerves. In MS, the loss of myelin affects the way nerves conduct electrical impulses to and from the brain. Symptoms vary widely and can include blurred vision, weak limbs, tingling sensations, unsteadiness, memory problems, and fatigue. Most people with MS are diagnosed between the ages of 20 and 40. There is no drug that can cure MS, but treatments are available which can modify the course of the disease.

Did you know? 

• Early diagnosis vital - An early diagnosis is vital to enable early treatment with disease modifying therapies that can minimise relapses and reduce future disability. Diagnosis also allows for lifestyle changes to help manage MS and improve quality of life.

• Every 5mins - Every 5 minutes, someone, somewhere in the world is diagnosed with MS.

• 30k children - MS affects children as well as adults, with at least 30,000 people under 18 living with MS.

• 2.8m people - There are more than 2.8 million people living with MS around the world.

• Twice as many females - There are at least twice as many females (69%) with MS as there are males (31%).

• 83% of countries - 83% of countries worldwide experience issues that prevent an early diagnosis of MS. No simple test - Neurologists typically use multiple tests to rule out alternative causes of symptoms before giving an MS diagnosis.

Barriers to an early MS diagnosis:

The majority (83%) of countries worldwide have barriers that prevent early diagnosis of MS. Some of the common barriers that stand in the way of diagnosis include:

• Lack of public awareness of MS symptoms

• Lack of awareness of MS symptoms among healthcare professionals

• No healthcare professionals available with knowledge to diagnose MS

• People not taking diagnostic tests e.g. due to costs or travel limitations

• Specialist medical equipment or diagnostic tests are not available

• Bureaucracy, inefficiency, complexity in the health system

• Diagnosis is too expensive for a government or insurance provider to fund.

Globally the most common barrier to getting an early diagnosis is a lack of awareness of MS symptoms among the public and healthcare professionals.

MS on the rise in Hobart:

Tasmania, more specifically the Hobart region has consistently had the highest recorded prevalence and incidence rates of multiple sclerosis in Australia. Scientists have found several risk factors that contribute to the development of MS. These include low sun exposure and low vitamin D, poor diet, and Epstein Barr virus (EBV) infection. On a positive note, the mortality rate for people living with MS has decreased, and the average life expectancy has increased.

The Mental Health Impact of Multiple Sclerosis:

Multiple Sclerosis can significantly impact mental health in various ways.

1. Depression: Up to 50% of people with MS experience major depressive disorder at some point, which is about three times higher than the general population Depression in MS can be both a reaction to the challenges of living with the disease and a direct symptom due to changes in the brain and immune system.

2. Anxiety: Anxiety disorders are also common, affecting about half of those with MS. The unpredictability of the disease can contribute to feelings of anxiety, which can further impact social interactions and cognitive functions.

3. Emotional Changes: People with MS may experience a range of emotional changes, including grief, sadness, irritability, and moodiness. These emotions are natural reactions to the changes and losses caused by the disease.It is important for those with MS to seek support from healthcare professionals, including neurologists, psychiatrists, and therapists, to manage these mental health challenges effectively.

4. Cognitive Behavioral Therapy (CBT) can be effective in managing depression and anxiety in MS by helping individuals identify and shift unhelpful thoughts and behaviours.                   

How You Can Help:

There are many ways to get involved and support the MS community:

• Raise Awareness: Share information about MS and the importance of early diagnosis on social media using the hashtag #WorldMSDay.

• Support Research: Donate to organisations dedicated to MS research and support services.

• Join Events: Participate in local or virtual events to show solidarity with those affected by MS.

• Support Groups and Programs: The National MS Society offers a variety of support groups and connection programs tailored to different needs, including in-person, online, and hybrid options.

• Online Communities: Online communities where people affected by MS can connect, share experiences, and find support.

• MS Buddy: A mobile app that connects people with MS for one-on-one support and conversation. It's a great way to find a buddy who understands your journey.

• The Raw Nerve Podcast – The official podcast of Mas Australia.

• Multiple Sclerosis Foundation Facebook Group: A Facebook group where members can share their experiences, ask questions, and offer support to one another.

• Patients Like Me: An online platform where people with various health conditions, including MS, can connect, share their experiences, and track their health.

MS Plus have opened a Wellbeing Centre in Hobart:

246 Murray Street, Hobart - a one-stop centre that is dedicated to supporting people with multiple sclerosis and other neurological conditions. The Wellbeing Centre offers a variety of tailored services to help you manage your health, wellbeing and achieve your goals.

• Exercise physiologists 

• NDIS services 

• Employment Support Service

• Physiotherapists

• Peer support

• Continence nurses 

• Occupational therapists 

• Nutritional support 

Payment for these services can be accessed through NDIS funding, My Aged Care, Private health insurance and paying privately with a Medicare rebate if eligible.  

Conclusion:

World MS Day is a reminder of the strength and resilience of the MS community. By raising awareness, sharing stories, and advocating for better diagnosis and treatment, we can make a difference in the lives of those living with MS. Let's come together to navigate MS and build a more informed and supportive world.