HomeNewsWorld MS Day: Raising Awareness and Sharing Stories of Strength

World MS Day: Raising Awareness and Sharing Stories of Strength

4 min read

May 30th marks World MS Day, a day dedicated to raising awareness about Multiple Sclerosis (MS), a condition that affects nearly three million people around the world and approximately 10,000 people in Ireland. 

MS is a chronic, often progressive neurological condition where the body’s immune system attacks the central nervous system, damaging the protective layer that surrounds nerve cells and disrupting signals between the brain and the body. While many people have heard of MS, few understand its reality unless they live with it themselves. Our Patient Advocate, Sorcha Boyle, who has lived with MS for over 10 years, couldn’t agree more. 

“I didn’t “get” MS, until I “got” MS. Give someone MS for 15 minutes and their perspective on tiredness would change.”   

Here she shares her inspiring story of being stronger than MS. Her message to others with MS is clear:

“Trust yourself and your abilities, and don’t let MS be the boss in your life.”  

Sorcha’s Journey to Diagnosis 

Sorcha was diagnosed with MS in April 2014, a year after starting to experience symptoms, while in the final year of her Midwifery degree.  

“While my diagnosis came as a relief, confirming that I wasn’t imagining things, it still felt like a bomb going off in my life.” 

Her symptoms included significant fatigue, pins and needles in her hands and arms, and a strange sensation in her right leg, which felt constantly wet and freezing cold. The tipping point came when she discovered she couldn’t see colours correctly with her left eye. Despite a neurological exam revealing abnormal reflexes, following initial tests she was told that nothing was wrong, and instead was advised to make lifestyle changes. This dismissive response marked the beginning of her self-advocacy journey.  

“I was determined to get answers. I asked for a copy of my MRI, went back to my GP and saved up enough money for private referral to a neurologist.” 

Her MRI scan and lumbar puncture were re-examined, revealing MS lesions and oligoclonal bands in her cerebrospinal fluid, a biomarker for MS, confirming her MS diagnosis. 

From Treatment to Crisis Management  

MS can have wide-ranging impacts, from minimal effects to severe disability. Some people may need caregivers, while many continue to live independently, juggling demanding jobs and daily responsibilities. 

By the time Sorcha had been switched to her fifth medication, she had already undergone surgery to remove her thyroid, endured weeks of hospitalisation and experienced a tumefactive relapse that required brain biopsies, extensive steroid treatment and intensive therapy. Despite this, she continued to relapse every four months.  

Her neurologist recommended a stem cell transplant, which was approved by the Multi-Disciplinary Team in London. In early 2022, Sorcha travelled to the UK for the procedure, where her stem cells were harvested and reintroduced into her body following chemotherapy, to reset her immune system. 

“Since then, my MS has been in hibernation, and I no longer need a leg brace. Becoming severely unwell allowed me to access this life-changing treatment, which would have otherwise been out of reach.” 

The Little Big Things 

During her extended stay in hospital, Sorcha’s memory suffered significantly. 

“In the early days, I didn’t recognise my daughter and had no ideas what year it was. For weeks, I couldn’t even remember my bank card PIN number. I was convinced that part of my brain had been removed!” 

But after about six weeks, like a bolt of lightning, her memory suddenly returned. She rushed to the ATM and withdrew cash, marking a turning point in her recovery. 

“That moment was a sign that I would be okay. From then on, things steadily improved – sometimes it’s the little things that make the biggest difference.” 

Right Treatment, Right Mindset 

Sorcha has learned to adapt and maintain her independence. 

“I’m kinder to myself now. I’ve discovered enormous resilience within myself. But I recognise my limitations, which is why I decided to stop working as a midwife.” 

Sorcha’s daughter is an enduring source of joy in her life, and she is lucky to have a very supportive extended family, 

“My family and friends she me for who I am – Sorcha, not just MS on legs. I’m still the same fun, loyal friend. Some people I considered friends fell off the radar after my diagnosis and relapse. It’s sad, but mostly for them because they’re missing out on me! When it comes to friends, quality always trumps quantity.” 

Driving Change 

Sorcha’s experience with MS isn’t the typical story, but that’s precisely what makes her voice so valuable. After retiring from midwifery, in 2019, she did the IPPOSI Patient course and in 2023, she became an EUPATI Fellow 

“Becoming a Patient Advocate has given me a new avenue to channel my intellect. The FutureNeuro Patient Panel is a perfect fit, drawing on my experience as both a healthcare professional (HCP) and a patient.” 

Sorcha also strongly advocates for embedding patient perspectives in the training of HCPs and regularly gives talks to students about MS, emphasising the importance of understanding patient perspectives.  

Looking Towards the Future 

We’ve come a long way in treating MS – it’s been one of the biggest success stories in medicine. Over the last 20 years, there has been a revolution in drugs that change the course of the condition. Research continues to explore links, such as the connection between Epstein-Barr Virus (EBV) and MS, aiming to uncover underlying mechanisms and develop more targeted treatments. One of our Clinician Researchers, Dr Hugh Kearney, has proposed a blood test to measure the immune response to the virus. Read the full paper here.