By Nele Handwerker
The podcast currently has 81 episodes available.
Personalized treatments, genetic risk factors, gender differences and the advantages of early, highly effective therapies.
You can read the full article here: https://ms-perspektive.com/ectrims-2024-ww1
This year, ECTRIMS 2024 in Copenhagen, Denmark, will once again bring together leading experts in multiple sclerosis (MS) from around the world. The prestigious conference is the premier event for researchers, physicians and healthcare professionals all working towards a common goal: improving quality of life through groundbreaking research and advances in the treatment of MS and related diseases. The event, which is expected to attract around 9,000 attendees, promises a rich program of inspiring keynote addresses, exciting oral and poster presentations, and carefully curated scientific and educational sessions. In addition, there will be numerous opportunities for networking and connecting with the international MS community. I have brought you some exciting papers to start my coverage of this year’s event.
From biomarkers that help predict disease progression to new insights into genetic risk factors and gender differences in treatment, these results underscore the growing importance of personalized care in the management of MS. Key findings include the benefits of early, high-potency treatments for children, the association of inherited genetic variants with MS risk, and the therapeutic inertia in the management of women with MS. These studies pave the way for more targeted and effective treatment strategies that could transform outcomes for people with MS worldwide.
Table of ContentsSerum neurofilament light chain and glial fibrillary acidic protein levels at disease onset unveil immunologic pathways of disability acquisition in multiple sclerosis, Monreal E., et al. (2024). Presented at ECTRIMS 2024.
Meier S., Willemse E.A., Schaedelin S., et al. (2023). Serum Glial Fibrillary Acidic Protein Compared with Neurofilament Light Chain as a Biomarker for Disease Progression in Multiple Sclerosis. JAMA Neurol., 80(3):287-297. doi:10.1001/jamaneurol.2022.5250
Lublin, F. D., Häring, D. A., Ganjgahi, H., et al. (2022). How patients with multiple sclerosis acquire disability. Brain: A Journal of Neurology, 145(9), 3147-3161. https://doi.org/10.1093/brain/awac016
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See you soon and try to make the best out of your life, Nele
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Dr. Natalia Szejko reveals latest research on gut microbiome for MS, MOGAD, and NMOSD, offering new hope for managing these conditions.
You can read all the questions and answers in the corresponding blog article: https://ms-perspektive.com/079-natalia-szejko
Welcome to today’s episode. Whether you have MS, MOGAD (myelin oligodendrocyte glycoprotein antibody-associated disease), or NMOSD (neuromyelitis optica spectrum disorder), I’m excited to share some fascinating insights into the gut microbiome with you today. My guest today is Dr. Natalia Szejko, a dedicated neurologist and researcher specializing in these disorders. Dr. Szejko’s work focuses not only on better treatments but also on exploring innovative areas such as the role of the gut microbiome in disease progression. In our conversation today, we will explore the latest research and discuss how lifestyle changes such as diet can potentially impact our health. As someone who has first-hand experience with the challenges of these conditions, I am excited to offer you practical insights that can make a real difference in the treatment of MS, MOGAD, and NMOSD. So, stay tuned – there is a lot to be hopeful about!
Table of ContentsMy name is Natalia and um I’m a neurologist trained neurologist and I’ve done my studies and later my specialty in adult neurology in Poland and also I did my PhD there and during my training I had an opportunity to work with patients with MS and related disorders and it was like a year-long experience with a great team of researchers and clinicians who really taught me a lot about this disease and it was very inspiring.
Now I’m completing a clinical and research fellowship in Calgary in Canada. And I’m a member of European Charcot Foundation. We have like a junior membership where we are fellows and I’m trying to be very active. I’m a member of the steering committee and also a member of TSF, The Sumaira Foundation, which is related to NMOSD and I’m the ambassador for Poland.
In terms of my research and clinical interests, they are related to, for example, treatment of MS with alternative and complementary medicine, one of them is the gut microbiome. And now I have also conducted clinical trials on MS and related disorders.
Finally, what message of hope or encouragement would you like to share with the listeners?First of all, I think it’s important to recognize that the field is developing very quickly. There are so many investigators and companies investing in this area, so don’t lose hope—even for those with more challenging forms of the disease, like primary progressive MS, that may not be responding well to current treatments. I believe we will have more treatment options soon.
Another piece of advice is to join forces with other patients. There are many inspiring stories and organizations that can offer support. Getting involved can make a real difference. I’ve seen firsthand how supportive groups, not just for patients but also for caregivers, can be incredibly beneficial. Hearing these stories and sharing experiences can really help.
Finally, I’m hopeful that patients will be more involved in research going forward. Your input is crucial—what you think makes a good intervention, what you’d like to see investigated. This is a message of hope: I hope you no longer feel excluded from the process.
Overall, I believe there is real reason for optimism.
How and where can interested people follow your research activities?You can find some of my studies on PubMed, and I’m also listed on the European Charcot Foundation website under the steering committee, where updates will be published. We’ve been quite active, and with Sarah, we’ve created a LinkedIn page for the European Charcot Foundation, where we’ll share more updates and information.
Additionally, you can follow my work during conferences where I’ll present my research. I was really happy to be here today!
---Thank you, Dr. Natalia Szejko, for your incredible dedication to advancing research in MS, MOGAD, and NMOSD. Your work brings hope to so many of us living with these conditions, and we’re truly grateful for your passion and commitment to improving patient care and outcomes.
See you soon and try to make the best out of your life, Nele
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Click here for an overview of all podcast episodes published so far.
Cladribine (Mavenclad, Leustat, Litak) is an induction therapy the supresses the immun system and is used for highly active MS.
You can read the complete article at: https://ms-perspektive.com/078-cladribine
Cladribine (Mavenclad, Leustat, Litak) is an immunotherapy from the field of immunosuppressants that is used to treat highly active multiple sclerosis (MS). It belongs to the class of disease-modifying therapies (DMTs), which use depletion to target the immune system in order to prevent the progression of the disease. Find out more about the principle of induction therapies, how cladribine works, how effective it is and the potential risks associated with it. You will learn about the role of cladribine in MS therapy, its different forms and what patients should know when considering this treatment, particularly with regard to pregnancy, breastfeeding and long-term health monitoring.
Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail about the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account.
Table of ContentsI used the following sources to create the content:
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See you soon and try to make the best out of your life, Nele
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Click here for an overview of all podcast episodes published so far.
Explore Dr. Emine Rabia Koç's insights on blending emotional and physical health for a holistic approach to MS treatment.
You can find the written version as blog article here: https://ms-perspektive.com/77-emine-rabia-koc
Today I speak with Dr. Emine Rabia Koç about the important intersection between mood disorders and patient care in multiple sclerosis. As an associate professor at Uludağ University Faculty of Medicine and a dedicated neurologist, Dr. Koç brings a wealth of knowledge and compassion to the MS community.
In this interview, Dr. Koç discusses the profound impact that mood disorders have on MS treatment and patient well-being. From her personal journey into the field of neuroimmunology to practical advice for patients and caregivers, Dr. Koç provides insights that underscore the importance of comprehensive care strategies that address both the physical and emotional facets of living with MS.
Table of ContentsThank you for the invitation. I am Emine Rabia Koç, Associate Professor at Uludağ University, Faculty of Medicine, Department of Neurology. Working in the field of neurology is a passion for me. During my neurology residency, neuroimmunology and autoimmune diseases of the nervous system were areas that particularly interested me. After completing my residency, I started working and doing research in this field. The more I learned, the more I loved it, and I continued my education and training in this field. Since 2022, I have been a student in the MS Master program organized in partnership with the University of Dresden and the European Charcot MS Foundation.
I am also an ambassador for the Sumaira Foundation, the voice of NMOSD and MOGAD patients worldwide.
I try to balance my life in this cycle; I am married and have two children. The moments I spend with them are precious to me. I like walking in nature, swimming, cycling, reading books, and visiting different places and cultures in my free time.
How and where can interested people follow your research activities?If you’re interested in following my research activities, you can find updates on my work through my university’s website and social media platforms. I also regularly share insights and findings on LinkedIn (Emine Rabia Koç),instagram(drkocrabia) where I engage with the MS community. I encourage everyone to stay connected, as collaboration and communication are key to advancing our understanding of MS.
---Many thanks to Rabia for giving us some insight views into the interaction of mood disorders and MS and for all her efforts that contribute in better health outcomes for her patients.
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.
Alemtuzumab (Lemtrada, Campath) is a DMT to treat highly active MS and has long-lasting effects and potential severe side effects.
You can read the full article on my blog: https://ms-perspektive.com/076-alemtuzumab
This time the focus is on alemtuzumab (Lemtrada, Campath). It is one of the highly effective immunotherapies and, in a subgroup of patients with highly active MS, even enables disease activity to be halted for more than five years. Due to its long-lasting effects on the immune system and sometimes severe side effects, it is used relatively sparingly.
It is used as a disease-modifying therapy for active multiple sclerosis, both in relapsing forms and, following FDA approval, also in active SPMS.
Due to its mechanism of action, alemtuzumab leads to immediate immune cell depletion of CD52-positive immune cells (primarily T cells and B cells). It is therefore used, for example, in patients with massive inflammatory activity who are at risk of a rapid increase in disability.
Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail about the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account.
Table of ContentsI used the following sources to create the content:
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You may also want to look at the posts on the other DMTs:
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 EDSS score helps neurologists to measure the progression of MS as it measures limitations in functional systems.
You can find the full article at: https://ms-perspektive.com/75-edss
The Expanded Disability Status Scale (EDSS) is a key tool used by neurologists to measure how Multiple Sclerosis (MS) affects your body. Understanding the EDSS can help you gain insight into your condition and assist in making informed decisions about your treatment. In this article, I’ll simplify the EDSS, explaining how it assesses eight key functions, from reflexes and balance to vision and mental health. Whether you’re new to MS or have been managing it for years, this guide will help you navigate the EDSS and its role in your care. Keep reading to learn more.
Table of ContentsIf you want to read more in-depth information, I recommend checking out the following pages:
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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 the S1P Modulators, known by the brand names Gilenya, Zeposia, Ponvory, Mayzent and their usage against active RRMS & SPMS.
You can find the complete text to read on my blog: https://ms-perspektive.com/074-s1p-modulators
Today it’s all about the group of S1P modulators, which includes fingolimod (Gilenya), ozanimod (Zeposia), ponesimod (Ponvory) and siponimod (Mayzent). The first three, i.e. Gilenya, Zeposia and Ponvory, are used as a disease-modifying therapy for active multiple sclerosis. Fingolimod (Gilenya) is even approved for pediatric MS. Mayzent is approved for active SPMS if the patient is already experiencing a worsening of MS independent of relapses, but also has localized inflammatory activity.
S1P modulators are pronounced sphingosine 1-phosphate receptor modulators and prevent the leakage of lymphocytes from the lymph nodes. This also prevents them from entering the central nervous system (CNS). The S1P receptor subgroups determine the side effect profile.
Please remember that I can only provide an overview here. Your neurologist and your MS nurse should advise you in detail on the right therapy for you. This is because they know your general state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account.
Table of ContentsI used the following sources to create the content:
Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another.
I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune.
---You may also want to look at the posts on the other DMTs:
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.
Today I’m talking to Crys about her life with multiple sclerosis as a first generation Latina. Crys was diagnosed at age eleven and experienced her most severe episode at age 13 when she was paralyzed from the neck down. She recovered from this episode thanks to the devoted support of her family, especially her mother.
Nevertheless, to this day it remains a great challenge to have information about the disease, its symptoms and treatment options available in Spanish. To help children, adolescents and young adults in similar situations feel better than she did, Crys explains her life and the daily challenges of living with a chronic illness with a zest for life.
Table of ContentsCrystal is a disabled creator and writer from the warm and sunny state of Arizona, USA. Despite her early MS diagnosis at age 11, she loves traveling and exploring new countries, tracking down cute coffee shops with the best matcha, reading, staying active, going to concerts, and spending time with her loved ones.
Through her social media platforms, Crystal shares relatable content for people with chronic illnesses and helps educate others about living with MS as a young first-generation Latina.
How and where can interested people find you online?I am on various platforms that include Instagram, TikTok, Threads, Twitter, Facebook, and YouTube as @CrystalBedoya
Is there anything else you would like to share with the listeners?I’m always here for support, I love connecting with more MS friends online, so don’t be afraid to send me a message. I’m here to chat, answer questions, and be as supportive as I can be.
---Thank you so much, Crys, for sharing your journey so far and creating content for people who are in a similar situation to you in one way or another. I hope life has many beautiful things in storefor you and rewards your strength with wonderful people and experiences.
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.
Natalizumab (Tysabri, Tyruko) is approved as disease-modifying therapy (DMT) for active RRMS with a rapidly evolving severe MS.
You can read the complete article on my blog: https://ms-perspektive.com/072-natalizumab
Today we are talking about natalizumab, which is known under the trade names Tysabri and Tyruko. The immunotherapy is used for active, severe courses of relapsing forms of MS.
Natalizumab is a migration-inhibiting drug that prevents the migration of T and B cells into the central nervous system.
Please remember that I can only provide an overview here. Your neurologist and your MS nurse should give you detailed advice on choosing the right therapy for you. This is because they know your overall state of health and you should also talk about your goals, wishes, fears and preferences so that these can be taken into account.
Table of ContentsI used the following sources to create the content:
Please remember, there is no one great medication that helps everyone, but it must always be weighed up what suits a particular person best. Other illnesses, personal goals and preferences must also be taken into account. Your neurologist and MS nurse are the right persons to talk to and can make individual recommendations. This article is for information purposes only and does not constitute a recommendation. What helps one person may not help another.
I hope that, together with your neurologist and MS nurse, you will quickly find the right immunotherapy for you. And that you can lead a fulfilled, happy and self-determined life with MS, supported by a healthy lifestyle and a dose of fortune.
---You may also want to listen to the episodes on the other DMTs:
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.
Dr. Adriana Casallas V. provides insights into the treatment and care of MS patients in Colombia including improvements and challenges.
You can find all questions and answers to read through on my blog: https://ms-perspektive.com/71-adriana-casallas
MS has long been known as an orphan disease in Colombia, but the increasing number of newly diagnosed patients is changing this picture. Dr. Adriana Casallas Vanegas is an MS specialist who is committed to providing the best possible care for people with MS. She studies multiple sclerosis management at the European Charcot Foundation and is a Fellow of the organization. Patients living with NMOSD or MOGAD also benefit from her fascination with demyelinating diseases. In the interview, Adriana provides insights into the Colombian healthcare system and contact points where those affected can find support.
Table of ContentsI am a neurologist specializing in demyelinating diseases. I spent some time studying in Spain and Mexico to prepare myself in the best way for patients. I am currently finishing my master’s degree in multiple sclerosis at the European Charcot Foundation, and soon I will go to Cemcat with the ECTRIMS scholarship. I am from Colombia and live an hour away from Bogotá, the capital of Colombia. I have 2 dogs named Bubba and Tango. I enjoy spending time with them, walking in nature, biking, and playing tennis. I come from a loving family that is always surrounded by many animals. I have a cheerful personality and I am always eager to learn new things and explore different trades. I am also very curious about technology, music, and literature.
Finally, what message of hope or encouragement would you like to share with the listeners?I want to express my deep gratitude to Colombian patients. Their invaluable contribution is pivotal for the advancement of treatments, knowledge, and strategies aimed at improving comprehensive management. Their unwavering strength and patience are fundamental to our progress. I want to emphasize that they are not alone, and together, we can achieve remarkable results. Lastly, I want to instill a message of hope; although the journey is long, we are committed to triumphing hand in hand.
How and where can interested people follow your research activities?You can follow my Instagram dracasallasneurologia. Also, you can find research and MS activities at X platform acv_adri.
---Many thanks to Adriana for all her commitment and efforts to improve the lives of people with MS in Colombia.
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 podcast currently has 81 episodes available.
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