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Raising awareness through real stories: Understanding the impact of MS

Amy Rundlett
By Amy Rundlett

It’s estimated that up to 2.9 million people in the world suffer from multiple sclerosis (MS), a condition caused by the immune system mistakenly attacking the brain and nerves [1].

As a result, it can cause a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. There’s currently no cure for MS, but medicines and other treatments can help control the condition and ease some of the symptoms.

This year, the theme of World MS Day is ‘Diagnosis’, underscoring the importance of early and accurate diagnosis for individuals living with MS. In this blog, we explore some of the cutting-edge developments shaping MS diagnosis and care in 2024 and find out firsthand how MS is impacting the lives of people like Amy, our Junior Traffic Manager, and her Dad.

Innovations in MS diagnosis and care

Early and accurate diagnosis of MS is crucial to start disease-modifying treatments as soon as possible, helping to delay progression and improve patient outcomes. In 2024, significant strides have been made in improving the diagnostic process for MS and changing the lives of people living with MS.

Imaging techniques
Advanced imaging techniques like magnetic resonance imaging (MRI), optical coherence tomography (OCT), and coherent anti-Stokes Raman scattering (CARS) microscopy are revolutionizing the diagnosis of MS by providing greater sensitivity and specificity compared to conventional methods.

A 2023 study confirmed that measuring retinal layer thickness with OCT can significantly improve early MS diagnosis and prediction of disease progression, and could act as a new biomarker, offering a “window to the brain” for detecting MS-related neurodegeneration earlier [3].

Treatment approaches
The introduction of personalized and targeted therapies has drastically changed the MS landscape. New disease-modifying therapies (DMTs) – therapies that can improve how MS develops over time – have been developed to reduce relapses, slow disease progression, and manage symptoms more effectively. These include antibody-based therapeutics like Ocrelizumab and Ofatumumab [4,5].

Researchers are also exploring innovative therapeutic strategies, such as stem cell therapy and immunomodulatory treatments, to revolutionize MS management. The main type of stem cell therapy being studied for MS is autologous hematopoietic stem cell transplantation (aHSCT).

In aHSCT, a patient’s own blood stem cells are collected, the immune system is then ablated with chemotherapy, and the stem cells are reinfused to rebuild a new immune system. The goal is to “reboot” the immune system and stop the autoimmune attack on the nervous system that drives MS progression [6,7].

Collaborative research initiatives
World MS Day 2024 emphasizes the importance of collaborative research efforts in advancing MS care. Initiatives like “My MS Diagnosis” are campaigning to raise awareness and advocate for better MS training for healthcare professionals, new research, and clinical advancements in MS diagnosis. By fostering a global network of researchers, clinicians, and advocates, these initiatives drive innovation and progress in the field of MS research.

Raising awareness through unique perspectives

By sharing real stories, we can help destigmatize MS and promote solidarity within the MS community as part of World MS Day. Our Junior Traffic Manager, Amy shares her experience throughout her Dad’s MS journey and how it has impacted his life:

“My Dad was diagnosed back in the summer of 2004, following an initial ‘relapse’ that impacted his muscle strength. My memory of this was quite scary; we didn’t know what had caused it and there was a sense of unknown for me and the family. Diagnosis took place in the hospital following two weeks of tests, to determine the diagnosis of relapsing-remitting multiple sclerosis (MS). The hospital staff were well versed in MS, and Dad received great care and support following the diagnosis.

Over the months and years that followed, Dad has experienced a number of relapses, which have varied in seriousness. Some have caused pain, numbness, face paralysis, extreme fatigue, and muscle spasms to name a few. His day-to-day life can be impacted by some of the regular symptoms, and he must live within his limits to avoid further impact of the condition.

He’s been fortunate that many of the relapses he has fully recovered from, however, more recently his diagnosis has changed to secondary progressive. This change means that he is more likely to have ongoing issues from each relapse he experiences. The ongoing symptoms he experiences such as hand spasms, loss of sensation in his leg, fatigue, and pain, are now all much less likely to subside following each relapse. Dad is careful to avoid infection risk also, as illnesses that may be fairly low risk to most people can be really dangerous to someone with MS. The COVID pandemic was a very scary time for us as a family, and plans sometimes have to change to keep Dad protected from illness.

Changes in his medication have enabled him to carry on with many aspects of life, he’s still able to work, enjoys playing with his hockey team, and venturing out on walks with the family. We’re very fortunate that he takes his condition completely in his stride, and tries to let it have as little impact on his life as possible while still listening to his body and slowing down when needed (or told he must!).

To many, an MS diagnosis may feel terrifying (and honestly, it is!), but my Dad has shown strength and resilience when dealing with everything this condition throws at him, and that makes me incredibly proud. We don’t know what’s around the corner with his illness, but with continuing advances in treatment, we remain positive that he can continue to fight it in the way we’ve witnessed him do so far.”

We each hold the power to make a difference through our voices, actions and support to empower those facing MS and drive vital research.

By raising awareness, challenging misconceptions, and supporting innovations in healthcare, we can all pave the way for a future where MS no longer dictates the lives of millions.


References:

  1. https://mstrust.org.uk/information-support/about-ms/how-common-multiple-sclerosis
  2. Waubant E. Improving outcomes in multiple sclerosis through early diagnosis and effective management. Prim Care Companion CNS Disord. 2012;14(5):PCC.11016co2cc.
  3. https://www.sciencedaily.com/releases/2023/07/230706124618.htm
    Robertson D, Moreo N. Disease-Modifying Therapies in Multiple Sclerosis: Overview and Treatment Considerations. Fed Pract. 2016 Jun;33(6):28-34.
  4. https://www.nationalmssociety.org/for-professionals/for-healthcare-professionals/managing-and-treating-ms/disease-modification
  5. https://www.webmd.com/multiple-sclerosis/stem-cell-therapies
  6. https://www.msif.org/research/challenges-of-ms-research/stem-cell-therapy-for-ms/

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