Dr. William Conte talks about the challenges and opportunities for LGBTQ+ people with MS – and how inclusive, empathetic care can succeed.

You can find the transcript on my blog: https://ms-perspektive.com/107-lgbtq

How do LGBTQ+ people with multiple sclerosis experience the healthcare system – and where do they encounter hurdles that often remain invisible? In this special episode, I talk to Dr. William Conte, a neuroimmunologist and member of the LGBTQ+ community himself, about a lack of representation, medical trust, mental health and the importance of affirmative, inclusive care.

Dr. Conte brings not only professional expertise but also personal perspective – and is passionate about ensuring that queer people with MS are finally seen, heard and receive better medical care. A conversation about courage, change and why “keeping an open mind” is sometimes the most important first step.

Table of Contents

• Introduction & Personal Perspective
• Health Disparities & Barriers to Care
• The Role of Inclusive & Culturally Competent Care
• Community, Advocacy & Research
• Quickfire Q&A Session
• Farewell

Introduction & Personal Perspective Can you share a bit about your journey as a neurologist specializing in MS and your experience as a member of the LGBTQ+ community?

My journey into neurology began during my undergraduate years. I started neuroscience research by chance and quickly developed a passion for it. That led me to medical school, then a residency in neurology, and ultimately to a subspecialization in neuroimmunology. During my residency, I was drawn to MS because of the patients and the rapid advancements in therapies at the time. Being a gay man myself, I recognized a lack of representation and research in LGBTQ+ MS patients and felt compelled to become an advocate for this community.

What is your message to healthcare professionals who want to improve care for LGBTQ+ MS patients?

Be curious. You don’t need to have all the answers or hang rainbow flags everywhere. Just take the time to learn. Whether it’s attending a session on LGBTQ+ health or simply asking thoughtful, respectful questions, it shows patients that they’re in the right place.

Where can listeners find you or learn more about your work?

I’m very Googleable! You can find me through my clinic’s website or on LinkedIn. I regularly publish and speak on these topics, and I’m always happy to connect.

---

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.

 

MS patients can also suffer from trigeminal neuralgia, which is very painful. Dr. Köchling explains the treatment. Translated interview.

You can read the full article including the treatment details on my blog: https://ms-perspektive.com/106-trigeminal-neuralgia

This time, I've translated the German interview with Dr. Monika Köchling about the causes and treatment options for trigeminal neuralgia. Since this form of facial pain can lead to extreme restrictions in the quality of life, it is extremely important to treat it. The good news is that there are many approaches to controlling the pain or even getting rid of it completely. However, this can sometimes take a little longer and it is important to work with your doctors to find a solution and possibly try several approaches.

The original interview was in German and I adapted it for the international MS community.

Table of Contents

• Introduction Monika Köchling
• Basics of trigeminal neuralgia in MS
• Treatment options for trigeminal neuralgia in MS
• Effects of trigeminal neuralgia in MS
• Quickfire Q&A
• Farewell

Introduction Monika Köchling

I work in Grevenbroich, Germany, as a neurologist, psychiatrist and psychotherapist in a large group practice, the NeuroCentrum am Rheinlandklinikum. I live in Düsseldorf and am married for the second time. I also have two grown-up sons. My hobbies include singing in a choir, hiking and poetry.

Finally, what is the most important message you would like to give to MS patients with trigeminal neuralgia?

Attitude is crucial. Don’t despair. Become and remain resilient and dare to try new things. To quote Hilde Domin: “I put my foot in the air and it carried me.”

---

Many thanks to Dr. Köchling for the in-depth insight into the treatment options for trigeminal neuralgia.

See you soon and make the most of your life,

Nele

You can find more information and positive thoughts in my free newsletter.

Here you will find an overview of all previous podcast episodes.

Sumaira Ahmed turned her NMOSD diagnosis into a global movement, founding The Sumaira Foundation to support patients and drive research.

You can read through all questions and answers on my blog: https://ms-perspektive.com/105-tsf

Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare autoimmune disease that can feel isolating and overwhelming. But for Sumaira Ahmed, her diagnosis became the spark that ignited a global movement. In this episode, we dive into her personal journey with NMO, the challenges she faced, and the resilience that led her to create The Sumaira Foundation (TSF)—an organization dedicated to raising awareness, supporting patients, and funding research for NMOSD and MOGAD.

Sumaira shares raw insights into her diagnosis, the treatment landscape then vs. now, and how finding community changed everything. We also discuss the power of advocacy, the impact of TSF Ambassadors worldwide, and the exciting developments shaping the future of NMOSD care.

Whether you’re a patient, caregiver, or simply interested in how one person can make a global difference, this conversation is filled with hope, inspiration, and practical insights.

Table of Contents

• Introduction – Who is Sumaira Ahmed?
• Personal Journey with NMO
• Facing Challenges & Finding Strength
• The Sumaira Foundation (TSF)
• A Message for Other Patients
• Quickfire Q&A Session
• Farewell

Introduction – Who is Sumaira Ahmed?

Hi, everyone. My name is Sumaira Ahmed, and I’m a patient living with seronegative Neuromyelitis Optica Spectrum Disorder (NMOSD). I live in Boston, Massachusetts and was diagnosed 11 years ago after sudden vision loss and weakness.

Six weeks after my symptoms started, I received my diagnosis. Just two months later, I founded The Sumaira Foundation, which is now 11 years old. I currently serve as the Executive Director.

Finally, what advice would you give to someone who has just been diagnosed with NMO or another rare disease?

Feel what you’re feeling—it’s okay to be sad, angry, or scared. Those emotions are valid, but don’t let yourself get stuck in them. There will be light at the end of the tunnel, even if it takes longer than expected.

Believe in yourself. Our minds and bodies are capable of so much more than we think. If I had given up when I was told I had only a short time left, none of this would have happened. Don’t give up!

How and where can interested people find you online?

You can visit The Sumaira Foundation at www.sumairafoundation.org. The website is available in 25 languages so that people from around the world can access information in their native language.

We are active on social media, and you can follow us on:

• Instagram, Facebook, LinkedIn, X (Twitter), Blue Sky, TikTok, and YouTube
• On YouTube, we have hundreds of educational and empowerment videos for patients and caregivers.

---

Nele von Horsten: That’s fantastic! Sumaira, thank you so much for your time and for sharing your incredible journey. I know I missed you at ECTRIMS in Milan, but I’m sure we’ll meet at another event soon!

Sumaira Ahmed: Absolutely, Nele! I appreciate this opportunity, and I look forward to seeing you at a future event.

 

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.

AI is transforming Multiple Sclerosis (MS) care by enhancing Shared Decision-Making (SDM), improving diagnosis, personalizing treatments, and empowering patients—discover the future of AI in MS with Dr. Stefan Ebener.

You can read the short version of the interview on my blog: https://ms-perspektive.com/104-ai-in-ms-care

Artificial intelligence (AI) is reshaping the management of multiple sclerosis (MS), particularly in shared decision-making (SDM) between patients and healthcare professionals. From early diagnosis and personalized treatment recommendations to improving doctor-patient communication, AI-driven tools are enhancing how MS is understood and treated.

In this interview, I speak with Dr. Stefan Ebener, an AI healthcare expert at Google, about the current and future role of AI in MS care. How can AI simplify complex medical data? What are its limitations? And how can it support MS patients in making informed treatment choices?

Together, we explore the transformative potential of AI in MS care and the importance of balancing technological advancements with human expertise.

Table of Contents

• Introduction – Who is Dr. Stefan Ebener?
• Understanding AI in Healthcare
• Shared Decision-Making with AI
• Improving Contact with Healthcare Providers
• Ensuring Privacy and Data Security
• Accessibility and Inclusivity
• Potential Challenges and Limitations
• Empowering Patients through AI

Introduction – Who is Dr. Stefan Ebener?

Dr. Stefan Ebener: My name is Dr. Stefan Ebener, and I lead an international team of experts at Google. Our goal is to help customers implement cutting-edge technologies for real-world applications, including AI solutions in healthcare.

What advice would you give MS patients who are curious about using AI tools to manage their condition?

Dr. Stefan Ebener: Be curious, but stay cautious. AI can be an excellent support tool, but always verify information and consult healthcare professionals before making medical decisions.

Nele von Horsten: Stefan, thank you for your insights! AI has incredible potential, but as you’ve mentioned, it must be used wisely.

Dr. Stefan Ebener: Thank you, Nele! It was a pleasure discussing AI’s role in MS care. Looking forward to seeing how AI continues to evolve in this space.

---

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.

 

Discover how epigenetic research is transforming multiple sclerosis treatment by uncovering the role of DNA methylation, gene regulation, and potential new therapies for MS progression.

You can read through all questions and answers on my blog: https://ms-perspektive.com/103-majid

Have you ever wondered how epigenetic mechanisms influence multiple sclerosis (MS) progression and why some people experience rapid disease worsening while others have a milder course? Could there be hidden biological switches beyond genetics affecting MS? In this deep dive, I explore the fascinating world of epigenetics with Dr. Majid Pahlevan Kakhki, uncovering how factors like DNA methylation shape MS progression and treatment outcomes.

Join me as we discuss groundbreaking research on how lifestyle, environment, and molecular modifications influence MS. Could epigenetic therapies hold the key to slowing or even reversing disease progression? Read on to find out how this cutting-edge science is paving the way for more personalized and effective MS treatments.

Table of Contents

• Introduction – Who is Dr. Majid Pahlevan Kakhki?
• Introduction to Epigenetics and MS
• Genetic Factors and MS Progression
• Clinical Implications for MS Patients
• Epigenetic Therapies and Future Prospects
• Broader Impact of Epigenetic Research
• Quickfire Q&A Session
• Farewell

Introduction – Who is Dr. Majid Pahlevan Kakhki?

Sure! My name is Majid Pahlevan Kakhki, and I’m originally from Iran, specifically from the Khorasan province in the northeast of the country. My childhood was closely tied to agriculture, as I spent a lot of time working in the saffron fields alongside my parents. As I grew older, I wanted to support my education and gain independence, so I learned tailoring and became quite skilled at it. This allowed me to finance my studies while remaining self-sufficient. I pursued a Ph.D. in Molecular Genetics in Iran, and after completing my doctorate, I moved to Karolinska Institutet as a postdoctoral researcher. Since then, I have been working there, focusing on cutting-edge research in my field.

Finally, what message of hope or encouragement would you like to share with the listeners?

„Don’t give up. I know that some days can be tough, but please remember that researchers around the world, including myself, are working hard to find better treatments and solutions for you. I truly believe that one day, we will hear the news that MS is cured, and we’ll be able to focus our research on curing other diseases.“

How and where can interested people follow your research activities?

I have a LinkedIn profile (https://www.linkedin.com/in/majid-pahlevan-kakhki) and also the Karolinska Institute (https://ki.se/en/people/majid-pahlevan-kakhki) webpage where our research is reported.

---

Many thanks to Majid and his colleagues for all the valuable research they are doing and the insights provided into it today.

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.

MS patients especially women are at higher risk of ewxperiencing domestic violence and abuse. Awareness is key followed to create change.

You can read through the questions and answers on my blog: https://ms-perspektive.com/102-dva

Domestic violence and abuse (DVA) is a silent crisis affecting millions worldwide – but what happens when a chronic illness like multiple sclerosis is part of the equation? Living with MS brings unique challenges, from mobility issues to cognitive changes that can make recognizing and escaping abusive situations even more difficult. Research on the intersection of MS and domestic violence is still in its infancy, but a team from the universities of Leeds and Nottingham is working to change that.

In the interview, I talk to Sue Britt, a chartered midwife, lecturer, and researcher at the University of Nottingham who is part of the study team, about how healthcare professionals respond to domestic violence and abuse in people with MS. With her background as a midwife and strong commitment to patient care, Sue sheds light on why people with MS—especially women—may face a higher risk of abuse, the warning signs to watch for, and how healthcare professionals can provide better support.

If you or a loved one has MS and is concerned about domestic violence, this article provides insight, resources, and practical steps for seeking help. It is time to break the silence, raise awareness, and create meaningful change in the MS community.

Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden.

Table of Contents

• Introduction – Who is Sue Britt?
• Understanding the Issue of Domestic Violence and Abuse (DVA) in MS
• The Connection Between MS and domestic violence and abuse
• Seeking Help and Support
• The Role of Research in Adressing domestic violence and abuse in MS
• Encouragement and Empowerment
• Quickfire Q&A Session
• Farewell

Introduction – Who is Sue Britt?

I am Sue. I’m actually a registered midwife by background and have a career in midwifery both as a clinical practitioner and a lecturer. Since 2022, I’ve been a full-time student at Nottingham University, where I’m exploring professional responses to domestic violence and abuse in people with MS.

I’m married to Dave, we have three dogs Maxx, Jess and Pippa. Because I have three dogs, I enjoy walking and hiking, but I’m also very active in the gym. One fact about me that your listeners might find interesting is that my first degree was in German! I’ve also lived in Germany in the past and worked at the University of Erlangen as a Lektorin.

Take care of yourself or your loved ones if you or they are affected by domestic violence or abuse. 

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.

 

 

How AI can improve shared decision making (SDM) for multiple sclerosis patients on their journey with Dr. Sven Jungmann.

You can read the full interview on my blog: https://ms-perspektive.com/101-sdm-ai

In today’s rapidly evolving healthcare landscape, the intersection of medicine and technology is transforming the way we approach patient care, treatment and long-term health management and artificial intelligence (AI) and shared decision making (SDM) is at the center of it all. Dr. Sven Jungmann, physician and entrepreneur combines two important areas of expertise. With his medical background and passion for tackling broader healthcare challenges, Dr. Jungmann has expanded his focus beyond the confines of hospitals and is committed to the power of digital solutions, artificial intelligence (AI) and automation in improving healthcare systems.

In this interview, Dr. Jungmann discusses the critical role of AI and digital tools in the management of chronic conditions such as multiple sclerosis (MS) and provides insights into how technology can support both patients and healthcare providers. He also emphasizes the need for intelligent, ethically responsible healthcare solutions that free up doctors and nurses while improving the patient experience. Through his entrepreneurial activities, his writings and his research, Dr. Jungmann continues to advocate for change with the goal of creating more efficient, humane and patient-centered healthcare.

Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden.

Table of Contents

• Introduction – Who is Dr. Sven Jungmann?
• Information on apps and digital solutions for people with MS
• General tips for evaluating and using digital health solutions
• Interaction of digital solutions and medical care
• AI and shared decision making
• Being an author
• Transforming power of AI
• Quickfire Q&A Session
• Farewell

Introduction – Who is Dr. Sven Jungmann?

It’s a pleasure to have the opportunity of making a small contribution here, Nele. Thank you so much.

I’m a physician by training who realized early on that I wanted to tackle the bigger challenges in healthcare—beyond the walls of a single clinic or hospital. Don’t get me wrong: We absolutely need dedicated doctors and nurses who serve patients one-on-one. But I also believe we need people who can help multiply the impact of practitioners through technology, artificial intelligence (AI), and digital tools.

Right now, too many healthcare systems are on the verge of financial collapse. We’re not training enough healthcare providers, and many of those who are trained end up frustrated by bureaucratic hurdles, way too many overhours, poor working conditions, and low payment (many people are still surprised when they find out how little many doctors actually earn). If we want sustainable, high-quality care, we need to embrace automation and digital solutions as much as possible in a smart, ethically responsible way. This includes everything from shared decision making to leveraging modern sensors and AI.

Personally, I love working across different disciplines—whether with engineers, designers, psychologists, economists, or physicists. It stretches my thinking and brings such a diversity of perspectives. Being an entrepreneur compounds this thrill: practically everything becomes your playground, and while that can be intense (I’ll admit it’s hard to “switch off”), it’s also incredibly rewarding.

How and where can interested people follow your research activities?

I’d love for people to connect with me on LinkedIn, where I regularly share updates and insights. I’m also planning to get more active on YouTube with short talks and interviews about the intersection of healthcare, AI, and entrepreneurship. And my company’s new website will go live soon: www.aiomics.io

---

I hope this interview has sparked your interest in trying out the new solutions available, while being aware of the possibilities and limitations of AI in shared decision making.

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.

Find out how digital twin technology based on AI and big data is transforming the treatment of Multiple Sclerosis by enabling personalized treatment, predicting disease progression, and optimizing patient management.

You can read a shortened summary of the interview on my blog: https://ms-perspektive.com/100-digital-twin

The concept of a digital twin is revolutionizing medicine, offering a new way to personalize treatments and predict disease progression. But what exactly does it mean for multiple sclerosis patients? In the 100th anniversary episode of the English MS-Perspektive Podcast, Prof. Tjalf Ziemssen, one of the world’s leading MS experts and innovators, explains how AI and big data are shaping the technology of digital twins to improve MS care.

We discuss how this innovative approach differs from traditional monitoring tools, its potential for predicting disease progression, and how it could help neurologists adjust treatments sooner. Beyond medical care, digital twins can also support lifestyle adjustments and rehabilitation strategies. And they can show patients whether they are being well cared for or missing important checkups.

Find out more about the real-world applications, current challenges and future possibilities of digital twin technology for people with MS.

Sie sehen gerade einen Platzhalterinhalt von Podcast Player. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden.

Table of Contents

• Introduction
• Potential Benefits for MS Patients
• Realistic Applications & Current Challenges
• The Future of Digital Twins in MS Treatment
• Closing Thoughts & Call to Action

Where can interested listeners follow your research or get involved?

Prof. Tjalf Ziemssen: You can follow my work through academic publications, MS research platforms, and social media channels. We also encourage those interested to engage with patient organizations that support digital health initiatives.

---

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.

Learn more about epidemiology of MS including risks, trends and where clincial trials need to be revised for better equity.

You can read the full article on my blog: https://ms-perspektive.com/99-epidemiology

In this overview of papers from ECTRIMS 2024, I have selected studies that look at development and frequency and influence progression. You will learn about the role of Epstein-Barr virus infections and the effects of social and health inequalities on the course of MS. These studies also highlight the growing need for inclusion in clinical trials and the importance of monitoring MS trends worldwide. By exploring these insights, we can better understand the complexities of MS and learn how they shape the future of care and research for the MS community.

Table of Contents

• 1. Risk and onset of multiple sclerosis after infectious mononucleosis (IM): a population-based study of >650,000 cases of IM 
• 2. Rising prevalence of Multiple Sclerosis in Switzerland – Results from the Swiss Multiple Sclerosis Registry
• 3. Multiple Sclerosis in the Greenlandic population
• 4. African American and Non-Hispanic White people with multiple sclerosis: social determinants of health and health inequities.
• 5. Clinical Trial Awareness among African Americans

---

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.

Latest treatments and research presented at ECTRIMS 2024 for managing primary progressive MS (PPMS). including innovative therapies like CAR T-cell therapy.

You can read the full article on my blog: https://ms-perspektive.com/098-ppms-ectrims

Primary Progressive Multiple Sclerosis (PPMS) presents unique challenges, as it often worsens without relapses and can significantly impact daily life. However, the growing body of research and treatment options is providing new hope for managing this condition. From exploring the effectiveness of established therapies like Ocrelizumab to cutting-edge advancements in CAR T-cell treatments, scientists and healthcare providers are uncovering ways to slow progression, improve outcomes, and enhance quality of life. This summary from ECTRIMS 2024 dives into the latest studies and innovations, offering insights to empower your MS journey.

Table of Contents

• 1. Anti-CD20 therapies in drug-naive primary progressive multiple sclerosis patients: A multicenter real-life study
• 2. Design of KYSA-7, A Phase 2, Open-Label, Randomized, Multicenter Study of KYV-101, an Autologous Fully Human Anti-CD19 Chimeric Antigen Receptor (CAR) T-Cell Therapy, in Treatment Refractory Primary and Secondary Progressive Multiple Sclerosis
• 3. Efficacy and security of ocrelizumab in patients with primary progressive multiple sclerosis (ppms) in a tertiary care hospital multiple sclerosis unit
• 4. GA Depot (long-acting IM injection of glatiramer acetate) Impact on EDSS stability in Relapsing forms of Multiple Sclerosis (RMS) and Primary Progressive Multiple Sclerosis (PPMS)
• 5. Impact of age on safety and effectiveness outcomes in persons with relapsing and primary progressive multiple sclerosis treated with ocrelizumab in the German real-world CONFIDENCE study
• 6. Brain Volume Maps Identify Primary Progressive Multiple Sclerosis Patients at High Risk of Accelerated Atrophy

---

Living with PPMS can feel overwhelming at times, but you are not alone. Research is advancing rapidly, with treatments and approaches designed to help slow progression, maintain independence, and enhance quality of life. Whether it’s monitoring your brain health, considering therapies like Ocrelizumab or GA Depot, or staying informed about revolutionary trials like CAR T-cell therapy, there is a growing arsenal of options to explore.

Remember, your journey with MS is unique, and the best path forward is one tailored to your needs in collaboration with your healthcare team. Stay proactive, prioritize your well-being, and take comfort in knowing that science, advocacy, and community support are on your side. Every small step—whether it’s discussing a new treatment or making a lifestyle change—can bring you closer to a brighter future. Keep believing in your strength and the progress that’s being made for us and our community.

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.