#166: Unseen MS Symptoms: A Patient Expert's Perspective from Iceland with Hjördís Ýrr Skúladóttir

#166: Unseen MS Symptoms: A Patient Expert's Perspective from Iceland with Hjördís Ýrr Skúladóttir

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

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Jaksot(173)

#171: The Gut-Brain Axis in Multiple Sclerosis. Interview with Prof. Dr. Anne-Katrin Pröbstel

#171: The Gut-Brain Axis in Multiple Sclerosis. Interview with Prof. Dr. Anne-Katrin Pröbstel

The gut–brain axis in multiple sclerosis is an exciting field of research that connects the gut microbiome, immune system and central nervous system. In this interview, Prof. Dr. Anne-Katrin Pröbstel ...

17 Kesä 19min

#170: Vaccinations and MS – What You Need to Know with Dr. Thomas Grüter

#170: Vaccinations and MS – What You Need to Know with Dr. Thomas Grüter

In this episode, Nele talks with neurologist Dr. Thomas Grüter about vaccinations and multiple sclerosis. The original interview was published in German in December 2024. This English version has been...

10 Kesä 15min

#169: Multiple Sclerosis in Nepal. Diagnosis, Treatment and Access to Care

#169: Multiple Sclerosis in Nepal. Diagnosis, Treatment and Access to Care

In this episode, Nele speaks with Dr. Ayush Chandra and Dr. Avinash Chandra about multiple sclerosis in Nepal. They explain why MS is still often diagnosed late, how limited access to MRI, neurologist...

3 Kesä 58min

#168: From Fragmented Care to Connected Care: The MS360° Approach with Dr. Isabel Voigt

#168: From Fragmented Care to Connected Care: The MS360° Approach with Dr. Isabel Voigt

In this episode, Dr. Isabel Voigt from the MS Center Dresden introduces the MS360° approach, a digital-first hybrid care model designed to make multiple sclerosis care more continuous, proactive, and ...

27 Touko 33min

#167: Living with MS: Fatigue, Walking & Energy — Insights from Sanam

#167: Living with MS: Fatigue, Walking & Energy — Insights from Sanam

In episode #167, Sanam Saeedi shares her perspective on living with MS, fatigue, walking and energy. Diagnosed in 2019, she explains how symptoms such as foot drop, balance issues and fatigue changed ...

20 Touko 28min

#165: MS Doesn't Define Me – How Patti Bevilacqua Turned Multiple Sclerosis into a Life of Purpose

#165: MS Doesn't Define Me – How Patti Bevilacqua Turned Multiple Sclerosis into a Life of Purpose

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. Ins...

6 Touko 49min

#164: EMSP 2026. Progress, Hope and Real Challenges in Multiple Sclerosis

#164: EMSP 2026. Progress, Hope and Real Challenges in Multiple Sclerosis

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, a...

29 Huhti 14min

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