MS-Perspektive - The Multiple Sclerosis Podcast
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MS-Perspektive - The Multiple Sclerosis Podcast

Podcast door Nele Handwerker

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In the MS-Perspektive Podcast, I present my view of multiple sclerosis and show you how you can make the best of the diagnosis. Because a beautiful and fulfilling life is also possible with multiple sclerosis. Here you will find information and strategies on how you can actively influence your course. In addition, I publish solo articles with my experiences, interview experts and on various topics related to living with MS as well as other affected people. In addition, there are a few episodes that serve the relaxation, positive attitude and stimulation. 

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93 afleveringen
episode #091: New treatment strategies in MS an ECTRIMS Special artwork
#091: New treatment strategies in MS an ECTRIMS Special

Learn more about new treatment for MS, focusing on innovative therapies like engineered vesicles, CAR-T, CD40L and high-dose vitamin D. To read the full article visit my blog article: https://ms-perspektive.com/091-new-treatment-strategies [https://ms-perspektive.com/091-new-treatment-strategies] This time, I will present some studies on new treatment options for MS that show promising results and were presented at ECTRIMS 2024. Some candidates are not that new, such as high-dose vitamin D, but the key here is the long-term observation of a large number of MS patients under clearly defined conditions. Furthermore, there are engineered extracellular vesicles (EVs), CAR-T cell therapies and CD40L inhibitors such as frexalimab. These therapies represent a shift towards targeted treatments that aim to modulate the immune system in a more precise way, without the severe side effects of current medications. It’s about the research behind these novel approaches, their potential benefits, and the possibility of achieving better outcomes for patients, especially in the progressive stages of the disease. Listen to the episode or read the post to stay up to date on how these innovations could change the future of MS treatment. Table of Contents * Why are new therapies important? [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] * Engineered small extracellular vesicles targeting regulatory T cells via CD40L signaling in multiple sclerosis [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] * Overview of CAR-T therapy in autoimmune diseases [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] * Future of new therapies in MS: CAR-T, CD40L and others [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] * Long-term outcomes of phase-1 study of neural stem cell transplantation in progressive multiple sclerosis [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] * High-dose cholecalciferol reduces multiple sclerosis disease activity after a clinically isolated syndrome : results of a 24-month placebo-controlled randomized trial (D-lay MS) [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] * Safety and Efficacy of Frexalimab in the Treatment of Relapsing Multiple Sclerosis: 18-month Results from the Phase 2 Open-Label Extension [https://ms-perspektive.de/?p=18453&preview_id=18453&preview_nonce=8aaec5a4aa&previewahttps://ms-perspektive.com/091-new-treatment-strategies=true#elementor-toc__heading-anchor-0] 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. [https://ms-perspektive.de/en/newsletter/] Click here for an overview of all podcast episodes published so far. [https://ms-perspektive.de/en/podcast-2/]

11 dec 2024 - 27 min
episode #090: Empowering the black MS community – advocacy, awareness, and support with Natalie Diana Busari artwork
#090: Empowering the black MS community – advocacy, awareness, and support with Natalie Diana Busari

Natalie focuses primarily on advocacy, awareness and support in her work to empower women and girls from the black MS community. You can read the whole interview on my blog: https://ms-perspektive.com/90-natalie-diana-busari [https://ms-perspektive.com/90-natalie-diana-busari] Living with multiple sclerosis can be an isolating experience, but what happens when you feel even more invisible because of your community, culture or ethnicity? I am delighted to be speaking today with Natalie Diana Busari, the founder and CEO of The Nerve Of My Multiple Sclerosis CIC. Natalie is a patient advocate dedicated to addressing the challenges faced by Black people living with MS, particularly Black women and girls, who are often underrepresented and underserved in research. Through her organization, Natalie is not only amplifying the voices of marginalized groups, but also creating much-needed resources to empower individuals and build a more inclusive MS community. Whether it’s advocating for better representation in research, sharing personal experiences to inspire others, or helping patients navigate the healthcare system, Natalie’s work supports many people in their everyday lives. In this episode, we will explore her journey from diagnosis to advocacy, discuss the unique challenges faced by Black people with MS, and learn about the initiatives that Natalie’s organization is driving to create lasting change. If you are seeking a deeper understanding of the diversity within the MS community or are a patient looking for empowerment and support, this interview is for you. Be inspired by Natalie’s story, her resilience and her vision for a future in which inclusion and equality are the norm in MS care. Table of Contents * Introduction - who is Natalie Diana Busari? [https://ms-perspektive.com/90-natalie-diana-busari] * Personal and Professional Journey [https://ms-perspektive.com/90-natalie-diana-busari] * Health Inequalities and Representation [https://ms-perspektive.com/90-natalie-diana-busari] * Impact of the Patient Organisation and Advocacy Work [https://ms-perspektive.com/90-natalie-diana-busari] * Bridging the Gap in MS Research and Clinical Trials [https://ms-perspektive.com/90-natalie-diana-busari] * Empowerment and Awareness [https://ms-perspektive.com/90-natalie-diana-busari] * Quickfire Q&A Session [https://ms-perspektive.com/90-natalie-diana-busari] * Farewell [https://ms-perspektive.com/90-natalie-diana-busari] Introduction - who is Natalie Diana Busari? Natalie Diana Busari is the founder of „The Nerve Of My Multiple Sclerosis CIC.“ This organisation is dedicated to supporting and representing Black individuals living with multiple sclerosis, with a primary focus on Black women and girls. Fun Fact: Natalie is passionate about design and enjoys drawing in her spare time. She also has a background in web design and development, which continues to influence her work today. Finally, what message of hope or encouragement would you like to share with individuals living with MS? To individuals living with MS: remember that there is life beyond diagnosis. You are not alone; there is a supportive community ready to help you navigate this journey. How and where can interested people find you online? You can find Natalie online through „The Nerve Of My Multiple Sclerosis.“ Stay tuned for updates as they are currently working on enhancing their online presence! But in the mean time you can type “the nerve of my ms on most social media platforms and we will be there. Thank you for tuning in! * Instagram [https://www.instagram.com/thenerveofmymultiplesclerosis/] * Facebook [https://www.facebook.com/thenerveofmyMS/] * TikTok [https://www.tiktok.com/@thenerveofmyms] * YouTube [https://www.youtube.com/channel/UCfvl5f2S5haf_9RpmW9MS5Q] * LinkedIn [https://www.linkedin.com/company/the-nerve-of-my-multiple-sclerosis-cic/] * X / Twitter [http://x.com/thenerveofmyms?s=11&t=F5bs6xtqYTjry8nNzzaSFA] * Website [https://nerveofmyms.org.uk/] --- It’s fantastic and very much needed to have people like Natalie around to raise awareness for underrepresented groups of MS patients. And I’m sure that she will keep on making a difference. 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. [https://ms-perspektive.de/en/newsletter/] Click here for an overview of all podcast episodes published so far. [https://ms-perspektive.de/en/podcast-2/]

04 dec 2024 - 1 h 12 min
episode #089: Understanding the Hidden Challenges of MS: Sexual, Bladder, and Bowel Health an ECTRIMS Special artwork
#089: Understanding the Hidden Challenges of MS: Sexual, Bladder, and Bowel Health an ECTRIMS Special

Learn more about the impact of sexual, bladder, and bowel issues in MS and the importance of tailored care to improve quality of life. You can read the corresponding article here: https://ms-perspektive.com/89-sexual-bladder-bowel [https://ms-perspektive.com/89-sexual-bladder-bowel] Living with MS means coping with a complex mix of symptoms that can affect both physical and emotional well-being. These include sensitive topics such as sexual health and bladder or bowel problems – issues that are not always discussed openly but are incredibly important for quality of life. Recent research and initiatives are shedding light on these areas and offering new insights and practical solutions for better care. In this summary of topics presented at ECTRIMS 2024, I look at the results of five recent studies addressing * sexual health in MS, highlighting its connection to mood, fatigue and overall quality of life; * Bladder and bowel dysfunction, which is common but often overlooked, and how early treatment can make a big difference. * Innovative approaches to care, including new training programs for healthcare professionals that aim to improve support for people with MS. You’ll gain insights into how to address these challenges. Whether it’s talking to your doctor about symptoms, exploring new treatment options, or just knowing you’re not alone, this post is designed to empower and support you on your MS journey. Table of Contents * 1. Sexual Dysfunction in Patients with Multiple Sclerosis in an Algeria Cohort [https://ms-perspektive.com/89-sexual-bladder-bowel] * 2. The importance of investigating sexual and sphincter disorders in people with multiple sclerosis: evaluation of their association with clinical features and impact on quality of life. [https://ms-perspektive.com/89-sexual-bladder-bowel] * 3. An Absence of Pelvic Floor Physical Therapy Referrals in MS Patients Experiencing Bladder Dysfunction [https://ms-perspektive.com/89-sexual-bladder-bowel] * 4. Bladder and bowel problems significantly affect well-being in individuals with multiple sclerosis - a cross-sectional study [https://ms-perspektive.com/89-sexual-bladder-bowel] * 5. Creating high quality bite size training for Multiple sclerosis (MS) bladder and bowel. An international initiative to enhance awareness of bladder and bowel care in patients with MS [https://ms-perspektive.com/89-sexual-bladder-bowel] --- Please don't be shy. Talk about all your symptoms and get help. Your quality of life is at stake, and there are many options available, so there is likely to be support for your individual problem. 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. [https://ms-perspektive.com/newsletter] Click here for an overview of all podcast episodes published so far. [https://ms-perspektive.com/podcast-2/]

27 nov 2024 - 22 min
episode #088: Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti artwork
#088: Immune Tolerance and MS. How the RED4MS Study Could Change MS Treatment with Dr. Andreas Lutterotti

Andreas Lutterotti explains the mode of action, the concept of the early clinical trial RED4MS, and what a success could mean for patients. You can read through all questions and answers on my blog: https://ms-perspektive.com/88-red4ms [https://ms-perspektive.com/88-red4ms] Multiple sclerosis is one of the absolute success stories in terms of disease-modifying therapy. Nevertheless, the search for new concepts continues and the RED4MS study is looking in a new direction. Neurologist Dr. Andreas Lutterotti and his colleagues are researching and developing a novel approach to retraining the immune system. Find out more about the RED4MS study and how this therapy aims to reduce the symptoms of MS while maintaining normal immune function, offering hope for more targeted and safer treatment. Dr. Lutterotti provides insights into the study's objectives, patient eligibility, and what participants can expect. This early study is initially concerned with exploring the safety of the therapy. Only in the second step will the right dose be found that hits the sweet spot between efficacy and tolerability. Find out more about the possible effects of the therapy on daily life, the strict safety measures, and what might happen if the results are positive. Table of Contents * Introduction – Who is Dr. Andreas Lutterotti? [https://ms-perspektive.com/88-red4ms] * RED4MS: Overview of the Therapy and Potential Benefits [https://ms-perspektive.com/88-red4ms] * RED4MS: Patient Experience and Eligibility [https://ms-perspektive.com/88-red4ms] * RED4MS: Impact of the Therapy and Safety Monitoring [https://ms-perspektive.com/88-red4ms] * RED4MS: Dosing and Administration [https://ms-perspektive.com/88-red4ms] * RED4MS: Effectiveness and Expected Outcomes [https://ms-perspektive.com/88-red4ms] * RED4MS: Long-term Implications and Availability [https://ms-perspektive.com/88-red4ms] * Quickfire Q&A Session [https://ms-perspektive.com/88-red4ms] * Farewell [https://ms-perspektive.com/88-red4ms] Introduction – Who is Dr. Andreas Lutterotti? I’m Andreas Lutterotti, originally from Austria, now living in Switzerland. I’m a neurologist with a focus on MS and a Chief Medical Officer at Cellaris AG. I’m married, have three children, and enjoy biking and traveling with my family. Finally, what message of hope or encouragement would you like to share with the listeners? Treatment development in MS has been very successful in a relatively short period of time. With more focus neuroprotective/-regenerative therapies and improvement of symptoms like fatigue we will hopefully improve the life of patients with MS in the future. How and where can interested people follow your research activities? www.cellerys.com [http://www.cellerys.com/] www.clinicaltrials.gov [https://www.clinicaltrials.gov/study/NCT06430671?cond=Multiple%20Sclerosis&aggFilters=status:not%20rec&locStr=Germany&country=Germany&term=red4ms&rank=1]  (contains a list of participating centers) The following countries participate in the trial: * Germany * Czech Republic * Switzerland * Italy --- Good luck with the clinical trial. Sounds like a promising mode of action. 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. [https://ms-perspektive.de/en/newsletter/] Click here for an overview of all podcast episodes published so far. [https://ms-perspektive.de/en/podcast-2/]

20 nov 2024 - 23 min
episode #087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco artwork
#087: Understanding and managing Neuromyelitis Optica (NMOSD). Latest Advances in treatment with Dr. Luis Alfonso Zarco

Neuromyelitis Optica Spectrum Disorder (NMOSD) need to be diagnosed and treated fast with highly effective therapies for a good prognosis. You can read the transcript of the interview here: https://ms-perspektive.com/87-luis-alfonso-zarco [https://ms-perspektive.com/87-luis-alfonso-zarco] Living with neuromyelitis optica spectrum disorder (NMOSD) can be challenging. But the more you understand about the condition and the latest research and treatment options, the better off you’ll be. In this interview, Professor Luis Alfonso Zarco, a leading neurologist from Colombia who specializes in NMOSD, shares insights into the symptoms, treatments, and advances in care for this rare autoimmune disease. Whether you have just been diagnosed or have been living with NMOSD for years, this conversation will give you a deep dive into the fundamentals of NMOSD care, from early recognition to personalized treatment options. Learn why timely intervention is important, how NMOSD differs from multiple sclerosis, and what the future may hold for NMOSD patients. Table of Contents * Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero? [https://ms-perspektive.com/87-luis-alfonso-zarco] * Understanding Neuromyelitis Optica Spectrum Disorder (NMOSD) [https://ms-perspektive.com/87-luis-alfonso-zarco] * NMOSD Disease Course and Prognosis [https://ms-perspektive.com/87-luis-alfonso-zarco] * First-Line Treatment Options for NMOSD [https://ms-perspektive.com/87-luis-alfonso-zarco] * Challenges and Accessibility in NMOSD Treatment [https://ms-perspektive.com/87-luis-alfonso-zarco] * Future Directions in NMOSD Treatment [https://ms-perspektive.com/87-luis-alfonso-zarco] * Quickfire Q&A Session [https://ms-perspektive.com/87-luis-alfonso-zarco] * Farewell [https://ms-perspektive.com/87-luis-alfonso-zarco] Introduction – Who is Prof. Dr. Luis Alfonso Zarco Montero? I’m Luis Alfonso Zarco, born in Barranquilla on Colombia’s Caribbean coast. I studied medicine at Universidad del Norte in Barranquilla and later specialized in neurology at Pontificia Universidad Javeriana in Bogotá. I also trained as a neuroimmunologist at Universidad Autónoma de Barcelona, and I’m currently a candidate for a Master’s degree in Multiple Sclerosis from Dresden International University and a fellow of the European Charcot Foundation. Currently, I’m based in Bogotá, where I work at Hospital Universitario San Ignacio and serve as a neurology professor at Pontificia Universidad Javeriana. As director of the Neuroscience Department, I oversee cases of high complexity. I’m married to Angelica Rico, a nurse specializing in occupational health, and we have two children: Maria Paula, a lawyer, and Luis Carlos, studying finance. I’m passionate about my work, especially caring for patients with demyelinating diseases like NMOSD. This work is meaningful because these conditions affect people’s quality of life, their aspirations, and dreams, and we can play a key role in helping them achieve their goals. Finally, what message of hope or encouragement would you like to share with individuals living with NMOSD? You’re not alone. Many professionals worldwide are dedicated to finding new treatments and improving your quality of life. Stay strong, and remember, support is always available. How and where can interested people follow your research activities? Prof. Luis Alfonso Zarco: You can follow me on Instagram at @dr_zarco [https://www.instagram.com/dr_zarco/]. --- Nele von Horsten: Thank you for sharing your insights on NMOSD, for your research, and for your dedication to patient care. Greetings to Colombia, and I hope to see you at a future ECTRIMS conference. Prof. Luis Alfonso Zarco: Thank you, Nele. It’s been a pleasure. --- 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. [https://ms-perspektive.de/en/newsletter/] Click here for an overview of all podcast episodes published so far. [https://ms-perspektive.de/en/podcast-2/]

13 nov 2024 - 32 min
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