#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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Episoder(179)

#177: A First Diagnosis of Multiple Sclerosis: Symptoms, Tests, and Next Steps

#177: A First Diagnosis of Multiple Sclerosis: Symptoms, Tests, and Next Steps

What may be the first signs of multiple sclerosis? Which tests are needed to diagnose MS, and what happens after the diagnosis? In this episode, I speak with Dr Datzmann, Senior Consultant at the MS C...

5 Aug 22min

#176: Progressive MS Research: Milestones, Setbacks and Hope with Tim Coetzee

#176: Progressive MS Research: Milestones, Setbacks and Hope with Tim Coetzee

Progressive MS research has made important advances, but many questions about disability progression, biomarkers, treatment, and quality of life remain unanswered. In this episode, I speak with Tim Co...

22 Jul 56min

#175: Multiple Sclerosis and Pain. How Exercise and Physical Activity Can Help

#175: Multiple Sclerosis and Pain. How Exercise and Physical Activity Can Help

Pain is one of the most common and life-impacting symptoms in multiple sclerosis. In this episode, Nele talks with Rasmus Christian Jungersen, PhD student at the Department of Exercise Biology at Aarh...

15 Jul 1h 8min

#174: MS Treatment Access in Australia. Deanna and Rachel on Living with Multiple Sclerosis, Advocacy, and the Future of Ocrevus, Kesimpta & Briumvi

#174: MS Treatment Access in Australia. Deanna and Rachel on Living with Multiple Sclerosis, Advocacy, and the Future of Ocrevus, Kesimpta & Briumvi

Deanna Renee and Rachel Kerr speak about living with multiple sclerosis in Australia, the importance of lived experience in policy, and the current uncertainty around PBS access to Ocrevus and Kesimpt...

8 Jul 41min

#173: Immunoadsorption for MS Relapses. Interview with senior physician Anna-Katharina Eser

#173: Immunoadsorption for MS Relapses. Interview with senior physician Anna-Katharina Eser

In this episode, I speak with Anna-Katharina Eser, senior physician at the MS Centre in Mainkofen, Germany, about immunoadsorption in multiple sclerosis. Immunoadsorption is a specialized blood purifi...

1 Jul 15min

#172: AI for MS. How the CLAIMS Project Could Transform MS Care – with Prof. Friedemann Paul

#172: AI for MS. How the CLAIMS Project Could Transform MS Care – with Prof. Friedemann Paul

In this episode, Prof. Friedemann Paul from Charité – Universitätsmedizin Berlin, Germany, explains how the European CLAIMS project aims to improve multiple sclerosis care through AI-assisted decision...

24 Jun 35min

#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 Jun 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 Jun 15min

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