MS-Perspektive - The Multiple Sclerosis Podcast

What are unseen MS symptoms really like? In this inspiring episode, Hjördís Ýrr Skúladóttir from Iceland shares her personal journey with multiple sclerosis, from diagnosis and burnout to becoming a patient advocate and former Chair of the Icelandic MS Society. Together, we talk about invisible MS symptoms such as fatigue, bladder problems, and emotional exhaustion, while also exploring leadership, healthcare in Iceland, and the power of community support. Hjördís explains how her background in education and policing shaped her resilience and communication skills, and why she believes openness and compassion are essential for living well with MS. Topics discussed: Living with unseen MS symptoms MS fatigue and misconceptions Iceland's healthcare system The role of MS nurses Becoming a patient expert Leadership and advocacy Community support and empowerment Work-life balance with MS Hope for the future of MS care Resources & Links MS-Perspektive Podcast: https://ms-perspektive.com/166-hjoerdis Hjördis website on LinkedIn on Facebook on Instagram Iceland MS Society Icelandic MS Society Oceans of Hope

What does it really mean to live a meaningful life with multiple sclerosis? In this episode, Patti Bevilacqua shares her deeply personal journey after being diagnosed with MS at just 22 years old. Instead of trying to "push through," she chose a different path—one shaped by self-awareness, resilience, and intentional living. Today, Patti is a speaker and advocate for people with invisible challenges. In this conversation, she opens up about identity shifts, career changes, and why MS does not define who she is. 👉 Read the full blog article here: https://ms-perspektive.com/165-patti 🔍 Topics covered in this episode: Patti's MS diagnosis at age 22 Early symptoms and first reactions Letting go of a dream career Living without disease-modifying therapies Navigating uncertainty in professional life Identity shifts and invisible challenges Becoming an advocate and public speaker Mindset, resilience, and purpose Why "MS doesn't define me" Living a meaningful life beyond diagnosis 🔗 Resources & Links: Patti Bevilacqua Website: https://patti-bevilacqua.com Newsletter: https://pattibevilacqua.substack.com LinkedIn: https://linkedin.com/in/patti-bevilacqua Instagram: https://instagram.com/fearlesswithms --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.

The EMSP 2026 Conference in Berlin highlighted how much is currently evolving in multiple sclerosis (MS) – from improved diagnostics and emerging therapies to long-overdue topics like fatigue, PIRA, and menopause. In this episode, I share my personal insights from Day 1 on site and summarize the key developments from Day 2. We explore why the "MS iceberg" is still widely misunderstood, how new approaches like CAR-T and stem cell therapy are shaping the future, and why access to care across Europe remains a major challenge. 👉 Read the full blog article: https://ms-perspektive.de/en/164-emsp 🔎 What we cover in this episode Personal impressions from EMSP 2026 in Berlin Patient stories: MS and NMOSD McDonald Criteria 2024 and improved MS diagnosis The "MS iceberg" and invisible symptoms like fatigue Poster insights: fatigue as a key burden in MS MS Selfie and decision support tools for immunotherapies CAR-T cell therapy and stem cell therapy Menopause and MS PIRA (Progression Independent of Relapse Activity) Access to MS care across Europe 🔗 Mentioned resources & episodes 👉 Barbara Willekens on CAR-T cell therapy 👉 Christoph Heesen on stem cell therapy 👉 Roland Martin on aHSCT 👉 Riley Bove on menopause & MS 👉 Gavin Giovannoni on PIRA 👉 Fatigue article 👉 Article: From Fatigue to Focus (ECTRIMS insights) 👉 MS Selfie Microsite: https://msselfie.co.uk/ 👉 McDonald Criterie 2024 👉 Full blog article: https://ms-perspektive.de/en/164-emsp --- See you soon and try to make the best out of your life, Nele For more information and positive thoughts, subscribe to my newsletter for free. Click here for an overview of all podcast episodes published so far.