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Sponsored by Four Seasons Landscape & Construction Services In this episode of Conversations with Rich Bennett, Rich sits down with Maria Chapman, a remarkable entrepreneur and advocate. Despite battling rare neuromuscular conditions, Maria rebuilt her life through writing and founded Connected Ghostwriting. She shares how she transformed personal challenges into a thriving business and now helps disabled entrepreneurs find their own paths to success. Guest: Maria Chapman Maria Chapman is the founder of Connected Ghostwriting and Journey to Success, a nonprofit dedicated to helping disabled entrepreneurs build sustainable businesses. After being medically retired due to rare neuromuscular conditions, Maria turned her passion for writing into a thriving agency. She is also a speaker and advocate for resilience and inclusive entrepreneurship. Main Topics: · Maria's journey from being medically retired to becoming a successful entrepreneur.· Challenges of living with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and myasthenia gravis.· The pivotal role of resilience and adaptability in overcoming adversity.· Founding Connected Ghostwriting and the importance of storytelling for nonprofits and professionals.· LaunSend us a textPre-order your copy today Join us for “One Song,” a benefit concert by the Big Infinite to support the Ed Lally Foundation's mental health and suicide prevention initiatives. This special evening will feature heartfelt music and person stories, fostering connection and well-being among attendees. Come together to celebrate unity and healing through the power of music.One Song Benefit Concert for the Ed Lally FoundatFour Seasons Landscape & Construction SeWhile we perform the traditional lawn and landscape bed services, our passion is providing drainage Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.Support the showRate & Review on Apple Podcasts Follow the Conversations with Rich Bennett podcast on Social Media:Facebook – Conversations with Rich Bennett Facebook Group (Join the conversation) – Conversations with Rich Bennett podcast group | FacebookTwitter – Conversations with Rich Bennett Instagram – @conversationswithrichbennettTikTok – CWRB (@conversationsrichbennett) | TikTok Sponsors, Affiliates, and ways we pay the bills:Hosted on BuzzsproutRocketbookSquadCast Contests & Giveaways Subscribe by Email
Guest: Hans Katzberg, MD Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is a complex immune-mediated condition affecting the peripheral nervous system. Join Dr. Hans Katzberg, Professor of Medicine at the University of Toronto, as he explains the pathophysiology behind CIDP, risk factors in disease development, and diagnostic strategies.
Guest: Sami Khella, MD With personalized approaches, alternatives to steroids, and novel therapies like efgartigimod, the treatment landscape for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is continuing to evolve. Join Dr. Sami Khella as he shares expert insights on our available options. Dr. Khella is the Director of Clinical Electrophysiology and a Professor of Clinical Neurology at the University of Pennsylvania, and he spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.
Guest: Sami Khella, MD With personalized approaches, alternatives to steroids, and novel therapies like efgartigimod, the treatment landscape for chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is continuing to evolve. Join Dr. Sami Khella as he shares expert insights on our available options. Dr. Khella is the Director of Clinical Electrophysiology and a Professor of Clinical Neurology at the University of Pennsylvania, and he spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.
Guest: Sami Khella, MD Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) can present in multiple ways, making diagnosis complex. Dr. Sami Khella joins the program to outline how we can distinguish CIDP from similar neurological disorders and explain how response to therapy can guide diagnosis. Dr. Khella is the Director of Clinical Electrophysiology and a Professor of Clinical Neurology at the University of Pennsylvania, and he spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.
What happens when your life is suddenly flipped upside down by a rare and debilitating illness? In this episode of Before You Bloom, I sit down with Anna, a 29 year old living in LA, who shares her powerful story of navigating life with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).Anna takes us back to the moment everything changed, how her symptoms first appeared, the terrifying uncertainty in those early weeks, and the long, frustrating journey to finally getting a diagnosis. We dive into the challenges she has faced within the medical system, the treatments and procedures she's undergone, and what daily life looks like for her now as she manages pain and fatigue.Beyond the physical struggles, Anna opens up about the mental and emotional toll of chronic illness, how she has grieved the loss of her old life, battled misconceptions about invisible illnesses, and found resilience in unexpected places. She shares the small wins, moments of joy, and mindset shifts that have helped her reclaim her sense of self.This conversation is raw, insightful, and deeply moving. If you or someone you love is facing chronic illness, Anna's words will offer encouragement, validation, and hope. Her ability to articulate her experiences so beautifully makes this an episode you won't want to miss!Find Anna : Instagram
The Plant Free MD with Dr Anthony Chaffee: A Carnivore Podcast
In this episode of The Plant Free MD with Dr. Anthony Chaffee, we hear the inspiring story of Renee Shove, who was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in 2019. At the time, Renee was reliant on a cane and undergoing rituximab infusions, while also taking high doses of oral medications. Fast forward to today, and she is no longer dependent on a cane, has stopped taking rituximab, and has her pain under control—all thanks to a life-changing Carnivore Diet. Renee's recovery is a powerful example of how diet and lifestyle changes can have a profound impact on chronic conditions, and her journey is one of hope for those struggling with CIDP and other autoimmune disorders. Tune in to hear her story and learn more about how the Carnivore Diet helped her regain control of her health. ✅ Dr Chaffee's website: www.thecarnivorelife.com ✅Join my PATREON for early releases, bonus content, and weekly Zoom meetings! https://www.patreon.com/AnthonyChaffeeMD ✅Sign up for our 30-day carnivore challenge and group here! https://www.howtocarnivore.com/ ✅Stockman Steaks, Australia Discount link for home delivered frozen grass-fed and grass finished pasture raised meat locally sourced here in Australia! Use discount code "CHAFFEE" for free gift with qualifying orders! http://www.stockmansteaks.com.au/chaffee ✅ 60-minute consultation with Dr Chaffee https://calendly.com/anthonychaffeemd/60-minute-consultation Sponsors and Affiliates: ✅ Brand Ambassador for Stone and Spear tallow and soaps referral link https://www.stoneandspeartallow.com/?ref=gx0gql8b Discount Code "CHAFFEE" for 10% off ✅ Carnivore t-shirts from the Plant Free MD www.plantfreetees.com ✅THE CARNIVORE BAR: Discount Code "Anthony" for 10% off all orders! https://the-carnivore-bar.myshopify.com/?sca_ref=1743809.v3IrTuyDIi ✅Schwank Grill (Natural Gas or Propane) https://glnk.io/503n/anthonychaffeemd $150 OFF with Discount Code: ANTHONYMD ✅X3 bar system with discount code "DRCHAFFEE" https://www.kqzyfj.com/click-100676052-13511487 ✅Shop Amazon https://www.amazon.com/shop/anthonychaffeemd?ref=ac_inf_hm_vp And please like and subscribe to my podcast here and Apple/Google podcasts, as well as my YouTube Channel to get updates on all new content, and please consider giving a 5-star rating as it really helps! This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions. Music Credit: Music by: bensound.com License code: MPTEUCI8DAXJOKPZ Music: bensound.com License code: FJQPPMCJLHEOYGQB Music: Bensound.com/royalty-free-music License code: KQAKMWSXIH3MJ4WX Music I use: https://www.bensound.com License code: 58NN4QOSKWJ7ASX9
Renee improved CIDP, gastroparesis, anxiety, depression, migraines, eczema, and perimenopausal symptoms. Instagram: @eatingmeattowalk YouTube: @eatingmeattowalk Timestamps: 00:00 Trailer 01:14 Introduction 05:34 Overcoming setbacks with IVIG treatment 09:53 Healing with carnivore diet 13:36 Medication weaning and lifestyle changes 15:12 Drug company influence and desperation 18:22 Normal EMG results discussion 21:38 Diet regret: harmed husband's health 26:09 Choosing health over heart risk 29:11 Reevaluating veganism and health 30:16 Veganism and misdiagnosed grip issues 34:16 Oncology: a revolving door experience 36:50 Struggles with suicide and anxiety 40:41 Vaccination experience and COVID challenges 44:54 Demyelination and nerve recovery process 48:31 Carnivore diet for chronic illness 51:57 Diagnostics beyond MRIs 52:51 Where to find Renee Join Revero now to regain your health: https://revero.com/YT Revero.com is an online medical clinic for treating chronic diseases with this root-cause approach of nutrition therapy. You can get access to medical providers, personalized nutrition therapy, biomarker tracking, lab testing, ongoing clinical care, and daily coaching. You will also learn everything you need with educational videos, hundreds of recipes, and articles to make this easy for you. Join the Revero team (medical providers, etc): https://revero.com/jobs #Revero #ReveroHealth #shawnbaker #Carnivorediet #MeatHeals #AnimalBased #ZeroCarb #DietCoach #FatAdapted #Carnivore #sugarfree Disclaimer: The content on this channel is not medical advice. Please consult your healthcare provider.
We've got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He's an incredible leader in the rare disease community and we're excited to have him on BloodStream! We'll also hear from Wes Michael from Rare Patient Voice. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast To learn more about our advocacy digital storytelling platform, Voices for Policy Change, head over to www.bleeding.org Learn more about survey for the bleeding disorder community from Rare Patient Voice at www.rarepatientvoice.com Check out Corbin Whittington's LinkedIn page Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter
In this AANEM podcast, Dr. Stino interviews Dr. Allen on the groundbreaking ADHERE study, published in Lancet Neurology in 2024, which investigated efgartigimod for treating chronic inflammatory demyelinating polyneuropathy (CIDP). As the largest CIDP trial to date with 322 patients across 146 sites, it marked the first major study of a targeted biologic therapy in CIDP. The trial featured a unique two-stage design: An open-label response phase followed by a randomized controlled phase for responders. Dr. Allen explains the rationale behind targeting IgG in CIDP, despite its less clear antibody-mediated mechanism compared to myasthenia gravis. The study demonstrated a 66-70% response rate in the open-label phase, with significantly lower relapse rates compared to placebo in the randomized phase. This research represents a significant advancement in CIDP treatment options, offering a weekly subcutaneous administration that could reduce treatment burden compared to traditional therapies.
In this episode of the Sunday Roast, Phil Carroll and Kevin Hornsby bring you a packed lineup of insights and updates. First up, we welcome Ben Clube, CEO of Energy Pathways, to discuss key milestones for the Marram Energy Storage Hub (MESH). The company recently secured Licence Operatorship approval from the North Sea Transition Authority for Block 110/4a, enabling progress toward the Field Development Plan and Environmental Statement submission—a major step toward the Final Investment Decision (FID) later this year. Ben also sheds light on the appointment of contractors PDi Ltd and Wood plc to advance MESH's development, underscoring its importance to UK energy storage and security amid volatile global markets and dwindling gas reserves. Next, we're joined by Shaun Day, Managing Director of Greatland Gold, to explore the company's strong December 2024 update following its acquisition of Telfer and Havieron. In just 27 days, Telfer surpassed production forecasts by delivering 33,882 ounces of gold equivalent, with dual train processing resumed and plans to extend mine life underway. Shaun also provides updates on the Havieron Feasibility Study and the company's robust financial position, highlighting Greatland's rise in the gold-copper sector. Finally, Tim McCarthy, CEO of ImmuPharma, joins us to discuss how the company is revolutionizing healthcare with peptide-based therapies. With its lead asset, P140, advancing in Phase 3 trials for lupus (Lupuzor™️) and pivotal Phase 2/3 trials for CIDP, ImmuPharma is pushing the boundaries of innovation in autoimmune and inflammatory disease treatments, leveraging proprietary technology and strategic partnerships to expand its pipeline. As always, we round up the week's biggest news stories and market movers. Tune in for an episode packed with valuable insights and expert commentary! 00:00 - 00:07:16 Weekly News Roundup 00:07:16 #EPP Interview 00:34:50 #GPP Interview 00:56:15 #IMM Interview 01:23:41 #EXR 01:23:47 #EME 01:23:58 #INC 01:24:07 #MILA 01:24:10 #CTAI 01:25:02 #PR1 01:27:36 #GMET 01:28:00 #BSFA 01:30:36 #TM1 01:38:51 #SVML #SVML Midweek Takeaway Ep: https://audioboom.com/posts/8641320 Disclaimer & Declaration of Interest This podcast may contain paid promotions, including but not limited to sponsorships, endorsements, or affiliate partnerships. The information, investment views, and recommendations provided are for general informational purposes only and should not be construed as a solicitation to buy or sell any financial products related to the companies discussed. Any opinions or comments are made to the best of the knowledge and belief of the commentators; however, no responsibility is accepted for actions based on such opinions or comments. The commentators may or may not hold investments in the companies under discussion. Listeners are encouraged to perform their own research and consult with a licensed professional before making any financial decisions based on the content of this podcast.
“ I never lost my ability to breathe. I never lost completely my ability to swallow. We had to adjust things for a little while. But I am a huge believer that being as fit at that moment as I was going to be all year—I needed that to get through what I got through and to be able to get up and moving again so quickly.” Lynn Rogers had completed one IRONMAN triathlon and was training for another when her hands started to go numb. Next, it was her feet and her tongue. In the end, she'd be paralyzed from the chest down—the consequence of a progressive, chronic autoimmune disease called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). Lynn entered rehab at the very hospital where she was working as a brain scientist, and though she regained her ability to walk and eventually to run, that was just the first step along a very long and bumpy road. Through it all—successful treatments and failed ones, daily symptoms like numb and tingling hands and feet interspersed with more serious flares—she's continued competing. But now, her training is infused with a far greater purpose. She credits the fitness and functionality she had when she got sick for facilitating her recovery, and the joy and community she finds in sport for making each day all the more meaningful. Lynn is an ambassador for Athletic Brewing, which in 2024 released an incredible documentary called Inches to Miles that chronicles her journey (and that of two other amazing athletes) to IRONMAN Lake Placid. In this episode—and the film—you'll learn the meaning behind Lynn's powerful mantra, “This is what we're doing now” and truly understand how, when it comes to chronic illness, there's always another chapter to the story. Resources/links: Lynn's website, Instagram Inches to Miles trailer and full movie A Runner's World article Cindy wrote about Lynn in 2018 A huge thank you to LEVER Movement, the exclusive sponsor of season 8 of The Injured Athletes Club podcast! The LEVER system is an innovative way to reduce your body weight, and the impact on your joints, while exercising on a treadmill. Use the code “TIAC20” to get 20% off your purchase. You can subscribe to The Injured Athletes Club on Spotify, Apple Podcasts, Audible, Amazon Music, or wherever you get your podcasts, and if you like what you hear, please leave us a rating or a review in Apple podcasts. That helps other injured athletes find the show. To access more resources for injured athletes: Buy Rebound: Train Your Mind to Bounce Back Stronger from Sports Injuries —now available as an audiobook! Buy Injured Athletes Club merchandise, including hoodies, stickers, patches, journals, mugs, hats, and gift cards Access webinar videos, mental rehab e-courses, and more great resources for injured athletes while supporting our work Join The Injured Athletes Club mailing list, for news and updates Join The Injured Athletes Club Facebook group, for support and camaraderie Like The Injured Athletes Club Podcast Facebook page, for the latest episodes Email us at hello@injuredathletesclub.com with questions, guest suggestions, or other feedback DISCLAIMER: This content is for educational & informational use only and & does not constitute medical advice. Do not disregard, avoid or delay obtaining medical or health related advice from your health-care professional because of something you may have heard in an episode of this podcast. You should not rely on this information as a substitute for professional medical advice, diagnosis or treatment. Please consult with a qualified medical professional for proper evaluation & treatment. Guests who speak on this podcast express their own opinions, experiences, and conclusions, and The Injured Athletes Club podcast hosts nor any company providing financial support endorses or opposes any particular treatment option discussed in the episodes of this podcast and are not responsible for any actions or inactions of listeners based on the information presented. The use of any information provided is solely at your own risk.
In this episode, we sit down with Olympic swimming legend Michael Klim, a gold medalist and world record breaker whose incredible career has inspired millions. Michael takes us behind the scenes of what it truly takes to reach the pinnacle of athletic success—from grueling training routines to the mindset required to compete on the world's biggest stage. But this episode goes beyond the pool. Michael shares his personal journey of resilience as he faces CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), a rare autoimmune condition that has transformed his life in unexpected ways. He opens up about the physical and emotional challenges of navigating life with CIDP and how he channels the same determination that made him a champion to overcome adversity. Whether you're an athlete, a health warrior, or simply someone looking for inspiration, this conversation is a powerful reminder of the strength of the human spirit. This is an episode you don't want to miss!
In this comprehensive discussion, four prominent neuromuscular experts—Drs. Bhaskar Roy, Jeff Allen, Diana Castro, and Luis Querol—explore recent developments in Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). The conversation centers on the new European Academy of Neurology and Peripheral Nerve Society guidelines, highlighting significant changes in diagnostic criteria and disease classification. The experts discuss the challenges of diagnosing CIDP, particularly in pediatric cases and variant forms, while emphasizing the importance of proper electrodiagnostic testing and the role of supportive criteria like CSF studies and MRI. They delve into the emerging field of autoimmune neuropathies and the significance of specific antibody testing. The podcast concludes with a discussion of treatment options, including traditional approaches (IVIG, corticosteroids, plasmapheresis) and newer therapies such as FcRn inhibitors and complement-targeting drugs, while also addressing the controversial role of rituximab in CIDP treatment. Throughout the discussion, the experts stress the importance of regular diagnostic reassessment and the need for more personalized treatment approaches based on patient profiles.
For this special season three finale, Martine is joined by Kathy Perez, Head of Global Patient Advocacy at argenx. They reflect on some of the most impactful and moving moments from guests this season. Kathy asks Martine about her favorite learnings and takeaways as host of the show. While life with autoimmune conditions like MG or CIDP includes a wide range of emotions, Kathy and Martine dig into perhaps the strongest of them all: hope. Whether managing frustrations or juggling the physical changes and pain, hope is what continues to shine through as a beacon for perseverance. Together, Kathy and Martine underscore the transformative power of sharing each untold story, building a strong community, and demonstrating how fostering hope becomes armor for adversity.See omnystudio.com/listener for privacy information.
'For me, the only decision was to put myself out there and become more of service to others.' Olympic gold medallist Michael Klim speaks with James about his diagnosis and life with CIDP, the same autoimmune condition James lives with. Michael discusses his childhood and Olympic career, how his worsening health affected his mental health, and how he ultimately decided to become vocal about his condition and support others. Michael Klim is a renowned Australian swimmer. He competed in three Olympic Games and won six medals, including two gold. Since 2020, Michael has lived with a rare autoimmune disorder, chronic inflammatory demyelinating polyneuropathy (CIDP). He has established the Klim Foundation to provide support to sufferers and champion the search for new treatments. Books & authors discussed in this episode: Ikigai: The Japanese Secret to a Long and Happy Life by Héctor García and Francesc Miralles This Is a Call: The Life and Times of Dave Grohl by Paul Brannigan Andrew Johns: The Two of Me by Andrew Johns and Neil Cadigan Johnathan Thurston: The Autobiography by Johnathon Thurston Open by Andre Agassi Kelly Slater: For the Love by Kelly Slater Get your copy of Klim from your local bookshop or library. Supporting libraries and neighbourhood bookshops supports authors. Upcoming events: Ashley is teaching Crafting Memoir for the New England Writers Centre online, Saturday 12 October, 2-3.30pm James is in conversation with Zahid Gamieldien at Manly Library on Tuesday 15 October, 6:30pm James is teaching Writing Setting and Landscape for Writing NSW, Saturday 26 October, 10am-4pm Ashley is doing her first author tour to the Mid North and Central Coast. Catch her speaking in Forster on Monday 21 October, in Port Macquarie on Monday 21 October, in Kempsey on Tuesday 22 October and at Erina Library on Wednesday 23 October. Ashley is teaching Writing Crime Fiction in Bowral on Thursday 7 November, 10am-4pm. Learn more about Ashley's bestselling psychological thriller Dark Mode and get your copy from your local bookshop or your library. Learn more about James' award-winning novel Denizen and get your copy from your local bookshop or your library. Get in touch! ashleykalagianblunt.com jamesmckenziewatson.com Instagram: @akalagianblunt + @jamesmcwatson
Craig's CIDP journey began in college when growing symptoms and fatigue halted his running career and confined him to a cane, then a wheelchair. But from the very beginning, Craig remained positive and focused on finding answers. Having seen some videos about CIDP, he worked with his doctor to determine his official diagnosis. Craig's curiosity and hunger for problem-solving inspired him to explore holistic approaches to supporting his overall health. Now Craig uses his experiences and creativity to pay it forward and connect with others through his own YouTube channel. Though his life took a considerable pivot, Craig navigates his health journey with a bit of humor and a lot of gratitude.See omnystudio.com/listener for privacy information.
Many autoimmune neuromuscular disorders are reversible with prompt diagnosis and early treatment. Understanding the potential utility and limitations of antibody testing in each clinical setting is critical for practicing neurologists. In this episode, Teshamae Monteith, MD, FAAN speaks with Divyanshu Dubey, MD, FAAN, author of the article “Autoimmune Neuromuscular Disorders Associated With Neural Antibodies,” in the Continuum® August 2024 Autoimmune Neurology issue. Dr. Monteith is the associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Dubey is an associate professor in the departments of neurology and laboratory medicine and pathology at the Mayo Clinic in Rochester, Minnesota. Additional Resources Read the article: Autoimmune Neuromuscular Disorders Associated With Neural Antibodies Subscribe to Continuum: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @headacheMD Guest: @Div_Dubey Transcript Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum, the premier topic-based neurology clinical review and CME journal from the American Academy of Neurology. Thank you for joining us on Continuum Audio, which features conversations with Continuum's guest editors and authors who are the leading experts in their fields. Subscribers to the Continuum journal can read the full article or listen to verbatim recordings of the article and have access to exclusive interviews not featured on the podcast. Please visit the link in the episode notes for more information on the article, subscribing to the journal, and how to get CME. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. Today, I'm interviewing Dr Divyanshu Dubey about his article on autoimmune neuromuscular disorders associated with neural autoantibodies, which is part of the August 2024 Continuum issue on autoimmune neurology. Welcome to the podcast. How are you? Dr Dubey: Hi, Dr Monteith. Thank you for inviting me to be a part of this podcast. I'm doing well. Dr Monteith: Well, why don't you introduce yourself to the audience? And, call me Tesha. Dr Dubey: I'm Divyanshu Dubey (please, call me Div). I'm one of the autoimmune neurology consultants here at Mayo Clinic Rochester. I'm an Associate Professor of neurology, as well as lab medicine and pathology. My responsibilities here are split - partly seeing patients (primarily patients with autoimmune disorders, including neuromuscular disorders), and then 50% of my time (or, actually, more than 50%), I spend in the lab, either doing research on these autoimmune disorders or reporting antibodies in a clinical setting for various antibody panels which Mayo's neuroimmunology lab offers. Dr Monteith: That's a nice overlap of subspecialty area. How did you get into this work? Dr Dubey: I think a lot of it was, sort of, by chance. Meeting the right people at the right time was the main, sort of, motivation for me. Initially, I trained in India for my medical school and didn't really got much exposed to autoimmune neurology in India. I think our primary concern in my training was sort of treating TB meningitis and cerebral malaria - that was my exposure to neurology, including stroke and some epilepsy cases. As a part of application for USMLEs and coming here to residency, I did some externships, and one of the externships was at Memorial Sloan Kettering Cancer Center, and that's when I worked a few weeks with Dr Posner and got introduced to the idea of paraneoplastic neurological syndrome working with him. And that sort of started - I wouldn't call it vicious cycle - but my interest in the area of autoimmune neurology and paraneoplastic neurological disorders, which subsequently was refined further through residency and fellowships. Dr Monteith: That's interesting. I actually rotated through - I did a externship also at Sloan Kettering, and I had a clinic with Dr Posner. And I thought, at the time, he was such a rock star, and, like, I took a picture with him, and I think he thought it was insane. And I didn't go into autoimmune neurology. So, you know, interesting pathways, right? Dr Dubey: Yes. And I think he's inspired many, many people, and sort of trained a lot of them as well. Dr Monteith: So, why don't you tell us what you set out to do when writing this article? Dr Dubey: So, I think, given my background and training in various subspecialties in neurology, I was, sort of, formally did fellowships in autoimmune neurology, as well as neuromuscular medicine. One of the areas in these areas that I focus on is in my clinical practice, as well as in my sort of lab work, is autoimmune muscular disorders - and that to, specifically, autoantibodies and their clinical utility for autoimmune muscular disorders. So, that's what I wanted to focus on in an article. When I was invited to write an article on autoimmune muscular conditions in general, I thought it was very difficult to pack it all in one chapter or one article, so I narrowed my focus (or tilted my focus) towards antibody-positive disorders and trying to understand how we as neurologists can firstly sort of identify these conditions (which may end up being antibody-positive) – and then, on the other hand, once we get these antibody results, how we can find the utility in them or find them useful in taking care of our patients. At the same time, I also wanted to kind of highlight that these antibodies are not perfect, they do have certain limitations – so, that's another thing I sort of highlighted in the article. Dr Monteith: So, why don't we just start with a very broad question - what do you believe the role of autoantibodies is in the workup of neuropathies and then neuromuscular disorders? Obviously, when we think of myasthenia gravis, but there are some presentations that you may not necessarily think to first order autoantibody tests. So, what is the role, and where does it fit in the paradigm? Dr Dubey: I think it's extremely crucial, and it's evolving as time goes on, and it's becoming more and more clinically relevant. Let's say three, four decades ago, the number of biomarkers which were available were very limited and only a handful - and there has been a significant increase in these biomarkers with growing utilization of newer techniques for discovery of antibodies, and more and more people jumping into this field trying to not only discover, but try and understand and validate these biomarkers (what they truly, clinically mean). These antibodies, like you pointed out, ones for myasthenia (such as acetylcholine receptor-binding antibodies, or MuSK antibodies), they can be extremely helpful in clinical diagnosis of these patients. We all know the importance of EMG in managing our patients with neuromuscular disorders. But, oftentimes, EMG nerve conduction studies are often not available at every center. In those scenarios, if you have antibodies with very high clinical specificity, and you're seeing a patient on examination whom you're seeing ptosis (fatigable ptosis), double vision, you're suspecting myasthenia, you send antibodies, and they come back positive. It brings you closer to the answer that may, in turn, require you to refer to a patient to a place where you can get high-quality EMGs or high-quality care. In addition to getting to the diagnosis, it also, sometimes, leads you in directions to search for what is the trigger. A good example is all these paraneoplastic neurological syndromes (which we started our conversation with), where once you find a biomarker (such as anti-Hu antibodies or CRMP5 antibodies) in a patient with paraneoplastic neuropathies, it can direct the search for cancer. These are the patients where, specifically, these two antibodies, small-cell lung cancer is an important cancer to rule out - they require CT scans, and if those are negative, consider doing PET scan – so, we can remove the inciting factor in these cases. And then, lastly, it can guide treatment. Depending upon subtypes of antibodies or particular antibodies, it can give us some idea what is going to be the most effective treatment for these patients. Dr Monteith: I think paraneoplastic syndromes are a very good example of how autoantibodies can help guide treatment. But, what other examples can you provide for us? Dr Dubey: Yeah, so I think one of the relatively recent antibody tests which our lab started offering is biomarkers of autoimmune neuropathies - these are neurofascin and contactin, and those are great examples which can target or guide your treatment. I personally, in the past, have had many CIDP patients before we were offering these testings, where we used to kind of start these patients on IVIG. They had the typical electrodiagnostic features, which would qualify them for CIDP. They did not show any response. In many of these cases, we tried to do sort of clinical testing or sort of research-based testing for neurofascin and contactin back in the day, but we didn't have this resource where we can sort of send the blood, hopefully, and within a week, get an answer, whether these patients have autoimmune neuropathy or not. Having this resource now, in some of these cases, even before starting them on IVIG, knowing that test result can guide treatments, such as considering plasma exchange up front as a first-line therapy, followed by rituximab or B-cell depleting therapies, which have been shown to be extremely beneficial in these conditions. And it is not just limited to neurofascin or contactin (which are predominantly IgG4-mediated condition), but the same concept applies to other IgG4-mediated diseases, such as MuSK myasthenia, where having an antibody result can guide your treatment towards B-cell depleting therapies instead of sort of trying the typical regimen that you try for other myasthenia gravis patients. Dr Monteith: And you mentioned where I was reading that, sometimes, nerve conduction studies and EMG can be useful to then narrow the autoantibody profiles. Oftentimes, in the inpatient service, we order the autoantibodies much faster, because it's sometimes harder to access EMG nerve conduction studies - but talk about that narrowing process. Dr Dubey: Yeah. And it goes back to the point you just made where we end up sending, sort of, sometimes (and I'm guilty of this as well), where we just send antibodies incessantly, even knowing that this particular patient is not necessarily likely to be an autoimmune neurological disorder, and that can be a challenge, even if the false-positive rate for a particular test is, let's say 1% - if you send enough panels, you will get that false-positive result for a particular patient. And that can have significant effects on the patient - not only unnecessary testing or imaging (depending on what type of antibody it is), but also exposure to various immunotherapies or immunosuppressive therapies. It's important to recognize red flags – and that's one of the things I've focused on in this article, is talking about clinical, as well as electrodiagnostic, factors, which make us think that this might be an autoimmune condition, and then, subsequently, we should consider autoantibody testing. Otherwise, we can be in a situation - that 1% situation - where we may be sort of dealing with a false-positive result, rather than a true-positive result. In terms of EMGs, I think I find them extremely useful, specifically for neuropathies, distinguishing between demyelinating versus exonal, and then catering our antibody-ordering practices toward specific groups of antibodies which are associated with demyelinating neuropathies (if that's what the electrophysiology showed) versus if it's an exonal pathology (considering a different subset of antibodies) - and that's going to be extremely important. Dr Monteith: You're already getting to my next question, which is what are some of the limitations of autoantibody testing? You mentioned the false-positivity rate - what other limitations are there? Dr Dubey: So, I think the limitations are both for seropositive, as well as seronegative, patients. As a neurologist, when we see patients and send panels, we can be in a challenging situation in both of those scenarios. Firstly, thinking about seropositives - despite the growing literature about neurology and antibodies, we have to be aware, at least to some extent, about what methodologies are being utilized for these antibody tests. And what I mean by that is knowing when you're sending a sample to a particular lab, the methodology that they're utilizing - is that the most sensitive, specific way to test for certain antibodies? We've learned about this through some of the literature published regarding MOG and aquaporin-4, which has demonstrated that these antibodies, which we suspect are cell surface antibodies, not only generate false-positive, but also false-negative results if they are tested by Western blots or ELISAs. Similar can be applied to some of the cell surface antibodies we are investigating on the autoimmune neuromuscular side (we have some sort of unpublished data regarding that for neurofascin-155). Secondly, it's also kind of critical when you're getting these reports to kind of have a look at what type of secondary antibodies are being utilized, an example being we talked about neurofascin-155, and I mentioned these are IgG4-predominant diseases, so testing for neurofascin IgG4 and knowing that particular patient is positive IgG4 rather than neurofascin pan-IgG. That's an important discrimination, and important information for you to know, because we have seen, at least in my clinical practice, that patients who are positive for neurofascin IgG4 follow the typical story of autoimmune neuropathies - the ones who are not (who are just neurofascin-155 IgG-positive), oftentimes can have wide-ranging phenotypes. The same applies to neurofascin-155 IgMs. And then (not for all antibodies, but for some antibodies), titers are important. A good example of that is a3 ganglionic receptor antibodies, which we utilize for when we're taking care of patients who have autoimmune dysautonomia - and in these cases, if the titers of the antibodies are below .2 nmol/L, usually, those don't have a high specificity for AAG diagnosis. So, I get referred a lot of patients with very low titers of a3 ganglionic receptor antibodies, where the clinical picture does not at all look like autoimmune autonomic ganglionopathy. So, that's another thing to potentially keep in mind. And then, on the seronegative front, it's important to recognize that we are still sort of seeing the tip of the iceberg as far as these antibodies or biomarkers are concerned, specifically for certain phenotypes, such as CIDP. If you look at the literature, depending upon what demographics we're looking at or sort of racial profiles we're looking at, the frequency of these autoimmune neuropathy biomarkers range from 5% to 20%, with much higher frequency in Asian patients - so, a good chunk of these diseases are still seronegative. In the scenario where you have a very high suspicion for an autoimmune neuromuscular disorder (specifically, we'll talk about neuropathies, because that's why we utilize tissue immunofluorescence staining on neural tissues), I recommend people to potentially touch base with that tertiary care lab or that referral lab to see if they have come across some research-based antibodies which are not clinically validated, which can give you some idea, some additional supportive idea, that what you're dealing with is an autoimmune neuromuscular disorder. So, we have to keep the limitations of some of these antibody panels and antibody tests in mind for both positive, as well as negative, results. Dr Monteith: So, you've already given us a lot of good stuff, um, about titer seronegativity and false-positive rates. And, you know, also looking at the clinical picture when ordering these tests, utilizing EMG nerve conduction studies, give us a major key point that we can't not get when reading your article. Dr Dubey: I think the major key point is we are neurologists first and serologists later. Most of these patients, we have to kind of evaluate them clinically and convince ourselves at least partly that this might be an autoimmune neuromuscular disorder before sending off these panels. Also, I find it useful to narrow down the phenotype, let's say, in a particular neuropathy or a muscle disease or a hyperexcitability syndrome. So, I have a core group of antigens, autoantigens, or autoantibodies, which I'm expecting and making myself aware of - things beyond that will raise my antenna - potentially, is this truly relevant? Could this be potentially false-positive? So, clinical characterization up front, phenotypic characterization upfront, and then utilizing those antibody results to support our clinical decision-making and therapeutic decision-making is what I've tried to express in this article. Dr Monteith: And what is something that you wish you knew much earlier in your career? Dr Dubey: It's a very challenging field, and it's a rapidly evolving field where we learn many things nearly every year, and, sometimes, we learn things that were previously said were incorrect, and we need to kind of work on them. A good example of that is initial reports of voltage-gated potassium-channel antibodies. So, back in the day when I was actually in my medical school and (subsequently) in my residency, voltage-gated potassium-channel antibodies were closely associated with autoimmune neuromyotonia, or autoimmune peripheral hyperexcitability syndromes. Now, over time, we've recognized that only the patients who are positive for LGI1 or CASPR2 are the ones who truly have autoimmune neuromuscular disorders or even CNS disorders. The voltage-gated potassium-channel antibody by itself, without LGI1 or CASPR2, truly doesn't have a very high specificity for neurological autoimmunity. So, that's one example of how even things which were published were considered critical thinking or critical knowledge in our field of autoimmune neuromuscular disorders has evolved and has sort of changed over time. And, again, the new antibodies are another area where nearly every year, something new pops up - not everything truly stands a test of time, but this keeps us on our toes. Dr Monteith: And what's something that a patient taught you? Dr Dubey: I think one of the things with every patient interaction I recognize is being an autoimmune neurologist, we tend to focus a lot on firstly, diagnosis, and secondly, immunotherapy - but what I've realized is symptomatic and functional care beyond immunotherapy in these patients who have autoimmune neurological disorders is as important, if not more important. That includes care of patients, involving our colleagues from physical medicine and rehab in terms of exercise regimen for these patients as we do immunotherapies, potentially getting a plan for management of associated pain, and many other factors and many other symptoms that these patients have to deal with secondary to these autoimmune neurological conditions. Dr Monteith: I think that's really well said, because we get excited about getting the diagnosis and then getting the treatment, but that long-term trajectory and quality of life is really what patients are seeking. Dr Dubey: Yeah, and as you pointed out, most of the time, especially when we are in inpatient service, or even when we're seeing the patients upfront outpatient, we are seeing them, sometimes, in their acute phase or at their disease not there. What we also have to realize is, what are the implications of these autoimmune neurological conditions in the long term or five years down the line? And that's one of the questions patients often ask me and how this can impact them even when the active immune phase has subsided - and that's something we are actively trying to learn about. Dr Monteith: So, tell me something you're really excited about in your field. Dr Dubey: I think, firstly (which is pretty much the topic of my entire article), is novel antibodies and new biomarker discoveries. That's very exciting - we are actively, ourselves, involved in the space. The second thing is better mechanistic understanding of how these antibodies cause diseases, so we can not only understand diseases, we can also try and understand how to target and treat these diseases - this is being actively done for various disorders. One of the disorders which continue to remain a challenge are T-cell mediated diseases, where these antibodies are just red flags or biomarkers are not causing the disease, but it's potentially the T-cells possibly attacking the same antigen which are causing disease process, and those are often the more refractory and harder-to-treat conditions. I'm hoping that with some of the work done in other fields (such as rheumatology or endocrinology for type one diabetes), we're able to learn and apply the same in the field of autoimmune neurology and autoimmune neuromuscular medicine. And then, the final frontier is developing therapies which are antigen specific, where you have discovered that somebody has a particular antibody, and if that antibody is pathogenic, can I just deplete that antibody, not necessarily pan-depleting the immune system. And there is some translational data, there's some animal model data in that area, which I find very exciting, will be extremely helpful for many of my patients. Dr Monteith: So, very personalized targeted therapies? Dr Dubey: Correct. Without having all the side effects we all have to kind of take care of in our patients when we start them on, let's say, cyclophosphamide, or some of these really, really, significantly suppressive immunosuppressive medications. Dr Monteith: Well, thank you so much. I learned a lot from reading your article to prepare for this interview, but also just from talking to you. And it's clear that you're very passionate about what you do and very knowledgeable as well, so, thank you so much. Dr Dubey: Thank you so much. Thank you for inviting me to do this. And thank you for inviting me to contribute the article. Dr Monteith: Today, I've been interviewing Dr Divyanshu Dubey, whose article on autoimmune neuromuscular disorders associated with neural autoantibodies appears in the most recent issue of Continuum on autoimmune neurology. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining us today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information, important for neurology practitioners. Use this link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at Continpub.com/AudioCME. Thank you for listening to Continuum Audio.
Beyond the unpredictable symptoms, Dana's CIDP journey included misdiagnosis after misdiagnosis and many lessons in insurance coverage. All of which made frustration a frequent feeling. There are many challenges–beyond the fatigue, muscle tingling, and weakness–associated with CIDP. Dana shares her story of living with CIDP, starting with muscle numbness on a camping trip, followed by years of appointments with multiple specialists and navigating insurance hurdles. Learning from her own CIDP journey, today, Dana uses her experiences to inspire, help, and connect with others in the CIDP and Guillain-Barré syndrome (GBS) community.See omnystudio.com/listener for privacy information.
Michael Klim is an Olympic gold medalist, Entrepreneur, Speaker and Author. Topics discussed - how Michael found out about his autoimmune disease (CIDP), the new normal, a carers perspective, visiting the Australian institute of sport with family, writing a book, Olympics, performing under pressure + what's next. Grab 15% OFF SXSW Sydney Badges using our promo code here. Subscribe to our Dream Big Social Club NEWSLETTER to stay up to date with all things Funny Business + more ~ https://dreambigsocialclub.beehiiv.com/subscribe Web ~ https://linktr.ee/funnybusinesspodcast Instagram ~ https://www.instagram.com/funnybusiness_au/ LinkedIn ~ Lach / Rob CONTACT ME (Lach) ~ lach@dreambigsocialclub.com
Vote for the Performance Intelligence Podcast here: https://www.australianpodcastawards.com/votingIn this episode we dive deep with Australian swimming legend, Michael Klim!
Tasha has always faced life's challenges head-on. Diagnosed with MG at the young age of 6, she quickly learned the importance of self-confidence. At 29, an MG crisis pushed her to manage her health from a new perspective. From her hospital bed, she created a nonprofit aimed not just at sharing her story but also at empowering and inspiring others within the MG community. Despite numerous setbacks, Tasha tapped into a deep well of strength, showcasing the transformative power of believing in oneself. See omnystudio.com/listener for privacy information.
Chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) can be difficult to distinguish from autoimmune nodopathy. In this podcast, Dr. Saima Chaudhry (1) is joined from the Netherlands by Dr. Ruth Huizinga (2) and Dr. Maarten Titulaer (3), to discuss their article, "Clinical relevance of distinguishing autoimmune nodopathies from CIDP: longitudinal assessment in a large cohort". They start with explaining what an autoimmune nodopathy really is, patient features to look out for, and the typical testing process for identifying CIDP. (1) Warren Alpert Medical School, Brown University, Rhode Island, USA (2) Department of Immunology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands (3) Department of Neurology, Erasmus MC, University Medical Center, Rotterdam, The Netherlands Please subscribe to the show on Apple Podcasts, Spotify or find it on your platform of choice. Your feedback and reviews are very appreciated. Follow JNNP on twitter: @JNNP_BMJ
Do you work for a CME company that needs urgent medical writing assistance? We can help. Visit nascentmc.com - The FDA has approved ensifentrine (Ohtuvayre) as an inhaled maintenance therapy for adults with COPD. Ohtuvayre is the first new mechanism of action for COPD treatment in over two decades, offering anti-inflammatory and bronchodilatory effects to improve lung function and reduce symptoms without the side effects of inhaled corticosteroids. The approval was based on Phase 3 trials showing significant improvement in lung function and fewer exacerbations, granted to Verona Pharma. - The FDA has approved thiotepa (Tepylute) for breast and ovarian cancer treatment. This new ready-to-dilute formulation saves preparation time and reduces risks, offering benefits like less-invasive treatment options. Breast cancer affects 1 in 8 women, while ovarian cancer has poorer outcomes due to late detection; the approval emphasizes Tepylute's ease of preparation and was granted to Amneal Pharmaceuticals. - The FDA has approved epcoritamab-bysp (EPKINLY) for adults with relapsed or refractory follicular lymphoma (FL) after two or more lines of prior therapy. EPKINLY is the first T-cell engaging bispecific antibody for this indication, providing a new option for patients with limited treatment choices. The approval was based on the EPCORE® NHL-1 clinical trial, showing a high overall response rate, granted to AbbVie. - The FDA has approved sofpironium topical gel (Sofdra) for treating primary axillary hyperhidrosis in adults and children aged 9 and older. Sofdra, an anticholinergic agent, reduces sweat production and significantly improves quality of life. The approval, based on two phase 3 studies showing significant improvement in sweat production, was granted to Botanix Pharmaceuticals, with expected availability in late 2024. - Nascent Medical offers exceptional medical writing support with skilled MD- and PhD-level writers specializing in needs assessments, manuscripts, slide decks, and more. Visit nascentmc.com for excellent medical writing assistance. - The FDA has approved pitolisant (Wakix) for treating excessive daytime sleepiness (EDS) in pediatric patients with narcolepsy. Pitolisant, a first-in-class treatment targeting the histamine system, was previously approved for adults with narcolepsy. The approval, based on a Phase 3 study, was granted to Harmony Biosciences. - The FDA has approved crovalimab-akkz (PiaSky) for treating paroxysmal nocturnal hemoglobinuria (PNH) in patients aged 13 and older. Crovalimab, a complement C5 inhibitor, provides sustained complement inhibition through low-dose administration. The approval, based on efficacy in maintaining complement inhibition, was granted to Genentech, Inc. - The FDA has approved efgartigimod alfa and hyaluronidase-qvfc (Vyvgart Hytrulo) for treating chronic inflammatory demyelinating polyneuropathy (CIDP) in adults. Vyvgart Hytrulo, previously approved for generalized myasthenia gravis, demonstrated effectiveness in a two-stage study showing significant improvement in patient outcomes. The approval was granted to Argenx. - The FDA has granted fast track designation to IBI343 for treating advanced pancreatic ductal adenocarcinoma (PDAC) that has relapsed or is refractory to one prior therapy. IBI343 is a monoclonal antibody-drug conjugate targeting CLDN18.2-expressing tumor cells. The designation, based on a phase 1 trial showing a 40% overall response rate, was granted to Innovent Biologics.
What would it feel like to have the very thing that mad you great - your body, strength and co-ordination - slowly and painfully taken away from you? As a swimmer, Michael Klim was on top of the world - he was literally ‘World Swimmer of the Year'. Trips to the Olympics, medals of every colour, 21 world records AND his face on the cover of a Foo Fighters Album, Michael really did have it all. However, in 2022 Michael was diagnosed with a life changing condition, wherein your body attacks it's own tissue - chronic inflammatory demyelination polyneuropathy (CIDP). In this episode, Hugh, Ryan and Josh chat to Michael about his equally impressive life out of the pool, and how his CIDP diagnosis has taught him a lot about identity, grief and relationships. In 2023, Michael partnered with Australian Red Cross Lifeblood to help raise awareness for the vital role blood donation plays in not just his life, but the 1 in 3 Australians who will need blood products in their lifetime. To help recipients like Michael and countless others book a blood donation here. https://bit.ly/4c8Z6tN To watch the full episode on YouTube, follow this link. https://bit.ly/3RHPUoi Links mentioned in the episode and extra resources:
in this episode of Lais and The Coach we go over the story of when I got guillan barre syndrome and how it affected our life Understanding Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP In this video, we delve into two important neurological conditions: Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). **What is Guillain-Barré Syndrome (GBS)?** Guillain-Barré Syndrome is a rare autoimmune disorder where the body's immune system mistakenly attacks the peripheral nerves. It often begins with weakness and tingling in the legs, which can spread to the upper body. Symptoms can progress rapidly, leading to muscle weakness, difficulty in walking, and in severe cases, paralysis. GBS is typically triggered by an infection and can be life-threatening if it affects breathing muscles. However, with prompt medical treatment, most people recover fully or with minimal long-term effects. **What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?** Chronic Inflammatory Demyelinating Polyneuropathy is a neurological disorder similar to GBS but with a chronic course. It involves the immune system attacking the myelin sheath of peripheral nerves, leading to prolonged weakness and sensory dysfunction. Unlike GBS, CIDP develops slowly and can last for months to years, often requiring long-term treatment. Early diagnosis and appropriate therapy are crucial to manage symptoms and prevent permanent nerve damage.
Julie is no stranger to adversity. Diagnosed with CIDP at the age of 28, in the midst of motherhood and a full-time job as a special education teacher, Julie quickly found herself balancing it all while managing the debilitating symptoms of her condition. As she started to find a sense of normalcy, life threw her another curveball: her husband was diagnosed with cancer and would now need Julie to care for him. Despite these challenges, Juile was unwilling to give up. She shifted gears, found strength within herself that she never believed possible, and turned her situation into an inspiring journey filled with creativity, passion, and hope for all.See omnystudio.com/listener for privacy information.
For certain rare diseases, therapies derived from human plasma, the largest component of blood, represent critical lifesaving and life-sustaining medicines. In many cases, it may represent the only therapeutic option. Takeda pharmaceutical's Plasma-Derived Therapies Business Unit works across immunodeficiencies, neuroimmunology, hematology, pulmonology and other conditions. We spoke to Giles Platford, president of the Plasma-Derived Therapies Business Unit at Takeda, about its work in plasma-derived therapies, its recently approved therapy for the rare neuromuscular condition CIDP, and what issues need to be addressed to ensure an adequate supply of human plasma for therapeutic applications.
Did you know that more than 20% of patients with chronic inflammatory demyelinating polyneuropathy (CIDP) do not respond to current first-line treatments? Credit available for this activity expires: 5/30/25 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/1000839?ecd=bdc_podcast_libsyn_mscpedu
Martine Hackett returns with season three of “Untold Stories”! This time, she delves deeper than ever into the heart of what it's like to live with conditions like myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP). From the frustration of misdiagnosis to the hope of managing symptoms, each emotion along the journey is important. But ultimately, these shared feelings bring the community together and are an essential part of strengthening our connection to others living with a severe autoimmune condition. Join us for new episodes starting May 29th.See omnystudio.com/listener for privacy information.
Send us a Text Message.Having been battling Systemic Mastocytosis and CIDP since birth, Shannon Dingey knows what it's like to have to take courage and fight hard. In her new book, she shares how there have been people who have seen how difficult its been to navigate her diagnosis, but there's more about her journey that no one has seen or known about. Most of the battles she has faced have been fought “behind the curtain.” Now, Shannon takes the leap to open up about her struggles and the debilitating symptoms she has dealt with daily, all while she appears to be a normal functioning person to the rest of the world. She shares about the anxiety, depression, identity issues and PTSD that no one saw on the surface. She once felt powerless and trapped behind the curtain. But as she reached her breaking point, she experienced healing, the curtain began to lift and she started to see purpose and power in her story. In Behind the Curtain, Shannon takes readers through her journey in a transparent and authentic way with the hope that your curtain may lift as well, and you'll find strength and courage on the other side. Support the Show.
Episode #9: In this episode, Craig shares his unique and integrative approach to healing, providing hope and insights for others as we delve into the remarkable story of Craig Andrianos and his victorious battle against CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Discover the power of holistic healing as Craig takes us through his personal experience, detailing the various elements that played a pivotal role in his recovery. From conventional medical treatments to complementary therapies, nutritional adjustments, and mindfulness practices, Craig's story is a testament to the effectiveness of a comprehensive and integrative approach to health. Our conversation explores not only the physical aspects of CIDP but also the mental and emotional components that are often integral to the healing process. Craig opens up about the support he received from healthcare professionals, the importance of a positive mindset, and the role of lifestyle modifications in achieving balance and well-being. Whether you or someone you know is navigating the challenges of CIDP or other chronic conditions, this episode offers valuable insights and practical strategies for incorporating integrative healing into your own life. Join us as we celebrate resilience, determination, and the holistic journey to health with Craig Andrianos. Subscribe now to "How I Healed It" and be inspired by stories of hope, resilience, and integrative healing. 00:00 - Coming Up… 01:19 - Introduction 02:10 - What is CIDP? 14:23 - How To Go Vegan - Whats your motivation? 17:24 - Fully Raw 22:34 - Day in the life of eating as No Egg Craig 24:24 - Fun Vegan Food 29:56 - Medication vs Diet 35:54 - Youtube to help others 44:12 - Healing Wisdom --- Send in a voice message: https://podcasters.spotify.com/pod/show/howihealedit/message
Have you ever wondered what it's really like for someone to make it through medical school?In this episode, Dr. Amanda Dudak, MD shares her personal rollercoaster – the ups, the downs, and everything in between. From dealing with money matters to facing unexpected health problems, her story is a real, raw look at the challenges med students might not always talk about.Join us as we unpack the grit, resilience, and camaraderie that shape the less-explored side of the journey to becoming a doctor.In this episode:[00:01:00] Dr. Dudak discusses the importance of highlighting unique experiences in medical school applications.[00:02:00] Dr. Dudak's focus on underserved populations and social determinants of health.[00:03:00] Variety of experiences in women's health, including volunteering at a crisis pregnancy center and Planned Parenthood.[00:04:00] Dr. Dudak's desire for a medical education that acknowledges differences in backgrounds and teaches navigating the healthcare system.[00:05:00] Dr. Dudak's atypical financial situation and decision-making process for choosing a medical school.[00:06:00] Balancing financial considerations and personal fit in choosing a medical school.[00:07:00] Challenges faced during medical school, including health issues and the financial burden.[00:08:00] Juggling responsibilities as a single parent and medical student; getting support for her sister.[00:09:00] Dr. Dudak's sickness during the first year of medical school and struggles with getting a diagnosis.[00:10:00] Taking a leave of absence due to health issues, facing challenges with the insurance company.[00:11:00] Diagnosis of CIDP (chronic form of Guillain-Barre syndrome) and the struggle to get medication approved.[00:12:00] Difficulties in getting appropriate treatment and the impact on daily life.[00:13:00] Returning to medical school with physical disabilities and navigating practical challenges.[00:14:00] Meeting with the Dean's office to discuss the logistics of returning to medical school.[00:27:00] Discussing challenges faced during rotations, accommodation needs, and support received.[00:28:00] Reflecting on the value of speaking to people who have faced similar challenges.[00:29:00] Sharing experiences with attendings and the importance of solidarity from peers.[00:30:00] Discussing the impact of accommodations on rotation experiences and evaluations.[00:31:00] Reflecting on the support received from the school and peers, and the impact on the overall experience.Key TakeawayDr. Amanda Dudak's story is a powerful reminder that challenges are a part of everyone's journey, and it's crucial to embrace diversity in medical education. Her experiences highlight the need for support, empathy, and adaptability within the healthcare system. As we wrap up, let's use Dr. Dudak's journey as a starting point for conversations about including and understanding the varied paths that individuals take to become healthcare professionals.Want to keep the convo going? Join our FB group!https://www.facebook.com/groups/sevosistasHave a burning question? A concern? A controversy or issue you want to hear covered? We got you, boo! Leave a voice message at 202 743 1404. We will play your recording on the podcast and address your topic (if you don't want it played just say it in the voicemail, we will still cover your topic!). This podcast is for you and we want to include you on this journey! Hope to hear from you soon
Herzlichen Dank an unsere WERBEPARTNER:www.carnivoro.de Supplemente rund um die Carnivore ErnährungMit dem Gutscheincode CARNITARIER erhältst du 10 % Rabatt auf deinen ersten Einkauf! Affiliate Link: www.carnivoro.eu/carnitarierin www.kaufnekuh.de Fleisch aus artgerechter Haltung mit fairen Preisen für LandwirteMit dem Gutscheincode CARNITARIER erhältst du 10 € Ermäßigung auf deinen Einkauf ab 50 €. Folge 131: Tom – vom Rollstuhl wieder zurück in den SportTom, 23, litt vor zwei Jahren an einer neurologischen Autoimmunerkrankung, die ihn an den Rollstuhl fesselte. Als Sportstudent musste er erleben wie, scheinbar ohne Ursache, innerhalb von wenigen Tagen eine Lähmung von den Füßen bis in die Hüfte auftrat. Monatelang musste er starke und übermäßig teure Medikamente einnehmen, die immer nur für kurze Zeit wieder auf die Beine brachten. Die Aussage einer der bekanntesten Neurologinnen war damals: “Sie werden nie wieder gesund werden.” Er hatte sich als Sportler immer vorbildlich “gesund” ernährt. Die offizielle Diagnose lautete: akut beginnende, schubförmig verlaufende, chronisch inflammatorische demyelinisierende Polyneuropathie, kurz CIDP. Man könnte die Erkrankung auch als Multiple Sklerose des peripheren Nervensystems bezeichnen. Zuvor gab es auch die Diagnose Guillain-Barré-Syndrom GBS.Dank zweier Ärzte, nämlich Bastian Hölscher (Episode 127) und Dr. Dirk Lemke wurde er mit Paleo und dem Coimbra-Protokoll, was eine Vitamin-D-Hochdosis-Therapie ist, wieder hergestellt. Inzwischen macht er Carnivore und es geht ihm damit am besten.Er studiert heute Medizin mit einer Leidenschaft für Ernährungsmedizin und NeuroMovement. Sein Wissen teilt er auf dem Instagramaccount @numbneurotherapy auf Englisch. Fleischzeit ist der erste deutschsprachige Podcast rund um die carnivore Ernährung. Hier erfahrt ihr Tipps zur Umsetzung des carnivoren Lifestyles, wissenschaftliche Hintergründe zur Heilsamkeit sowie ökologische und ethische Informationen zum Fleischkonsum. Eine Übersicht über alle Folgen findet ihr hier: www.carnitarier.de/fleischzeitpodcastAndrea Siemoneit berichtet nach über drei Jahren carnivorer Ernährung über ihre Erfahrungen und Erkenntnisse. Außerdem interviewt sie andere Carnivoren und Wissenschaftler.Ihr findet sie auf Instagram unter @carnitarierinHandbuch der Carnivoren Ernährung: www.carnitarier.de/shop Haftungsausschluss:Alle Inhalte im Podcast werden von uns mit größter Sorgfalt recherchiert und publiziert. Dennoch übernehmen wir keine Haftung für die Richtigkeit, Vollständigkeit oder Aktualität der Informationen. Sie stellen unsere persönliche subjektive Meinung dar und ersetzen auch keine medizinische Diagnose oder ärztliche Beratung. Dasselbe gilt für unsere Gäste. Konsultieren Sie bei Fragen oder Beschwerden immer Ihren behandelnden Arzt. Haftungsausschluss:Alle Inhalte im Podcast werden von uns mit größter Sorgfalt recherchiert und publiziert. Dennoch übernehmen wir keine Haftung für die Richtigkeit, Vollständigkeit oder Aktualität der Informationen. Sie stellen unsere persönliche subjektive Meinung dar und ersetzen auch keine medizinische Diagnose oder ärztliche Beratung. Dasselbe gilt für unsere Gäste. Konsultieren Sie bei Fragen oder Beschwerden immer Ihren behandelnden Arzt.
For the free course "ChatGPT4 for Medical Writers and Editors," go to learnAMAstyle.com Visit Nascentmc.com/podcast for detailed show notes and links. Erdafitinib for Urothelial Carcinoma: The FDA has fully approved erdafitinib (Balversa) for advanced or metastatic urothelial carcinoma with FGFR3 genetic alterations in adults. This follows its initial accelerated approval and is based on the phase 3 THOR trial results, showing improved survival rates and manageable side effects. Erdafitinib reduced death risk by 36% and had a lower treatment discontinuation rate compared to chemotherapy. TTFields in NSCLC: The FDA is reviewing a premarket approval application for tumor treating fields (TTFields) combined with standard therapies for platinum-resistant non–small cell lung cancer. TTFields, first approved in 2011, disrupt cancer cell division and showed enhanced survival in NSCLC patients when combined with immune checkpoint inhibitors or docetaxel, without increasing systemic toxicities. The FDA's decision is expected in the second half of 2024. AI-Powered Device to Detect Skin Cancer: The FDA has approved the first AI-powered handheld device by DermaSensor for assisting in skin cancer detection. It uses AI-driven spectroscopy for analyzing skin lesions and is based on a study involving over 1000 patients. While not a primary screening tool, it aids in detecting melanoma and other skin cancers, especially in patients over 40, and requires further validation testing. Casgevy for Transfusion-Dependent Beta Thalassemia: The FDA has approved Casgevy (exa-cel), developed by Vertex Pharmaceuticals and CRISPR Therapeutics, for treating transfusion-dependent beta-thalassemia. This follows its approval for sickle cell disease and marks the first CRISPR gene-editing technology application for this condition. The approval came ahead of the anticipated date and follows Bluebird Bio's 2022 approval for a similar gene therapy. HyQvia for CIDP: HyQvia, an immune globulin infusion 10%, has been approved by the FDA for chronic inflammatory demyelinating polyneuropathy (CIDP) in adults. Initially approved for primary immunodeficiency, HyQvia is the only product combining immunoglobulin with hyaluronidase, allowing for monthly subcutaneous infusions. The approval is based on its demonstrated efficacy in preventing neuromuscular disability relapse. Physicians' Understanding of FDA Approval Process: A national survey reveals that many physicians have limited understanding of the FDA's drug and medical device approval processes. Only 41% of the surveyed physicians reported moderate or better comprehension of the drug approval process. Despite believing in the adequacy of FDA standards, there's a call for more rigorous post-marketing studies and enhanced education on FDA processes to avoid misconceptions and inaccurate patient advice.
Gene therapy approved for beta thalassemia; treatment for preventing of chronic inflammatory demyelinating polyneuropathy relapse; device to aid dermatologist referrals; vertebral strength device for low-bone mass; Narcan shelf-life extension
As a successful and resilient attorney, Rorey was blindsided by the onset of debilitating muscle weakness and fatigue. After months of countless tests, he found a sense of relief when doctors diagnosed him with chronic inflammatory demyelinating polyneuropathy (CIDP). He navigated the complications of a condition that is not always visible or understood by others. Looking to be an active partner in his treatment, Rorey used his analytical skills to do research and find ways to manage his condition. With family support and an amazing healthcare team, he cultivated grace and acceptance for his condition. Learning to not only manage his physical limitations, Rorey has also found a new perspective on his overall health and overcoming challenges through his CIDP journey.See omnystudio.com/listener for privacy information.
OverviewLast episode as of Dec 2023Emily Ana Levy is a distinguished social impact entrepreneur, renowned patient advocate, healthcare Key Opinion Leader, and acclaimed international public speaker. Emily's journey led her to co-found Mighty Well in 2016. It's a startup driven by her personal experiences as a patient grappling with chronic neurological Lyme disease and autoimmune conditions, along with the challenges of managing vascular access devices. Mighty Well's direct-to-patient brand offers innovative medical products and comprehensive digital learning on vascular access, empowering patients to confidently navigate their health journey. With an unwavering commitment, Levy and her team have successfully launched seven adaptive medical products, notably the Class 1 FDA-registered PICCPerfect® Pro. Emily and Mighty Well's impact has been featured across various media outlets such as The New York Times, The Wall Street Journal, Who What Wear, The Boston Globe, PBS, Forbes, and more. In 2021, inspired by her transformative healing journey in the Amazon and stepping into her gifts as a seer, medium, and deathwalker, Emily established Hamsa Healing. In her practice, she is dedicated to facilitating clients in experiencing profound healing practices from the Amazon and the spiritual realm — practices that played a vital role in saving her life and putting her chronic illnesses into remission. Currently residing in Providence, the heart of the Ocean State of Rhode Island, Emily finds solace in cold water plunges that invigorate her senses and ground her in the present moment. She cherishes moments at home with her two adopted poodles, a warm blanket, and a cup of tea; valuing introspection over bustling networking events. Emily remains devoted to self-discovery, eager to share her insights with folks who, like her, have felt marginalized within a business and medical system that often overlooks their needs for visibility, understanding, and validation. What started as an entrepreneurial journey to 'turn sickness into strength' has now become one of learning strength from sickness.Key LinksMighty WellDr. Casey Kelley on UP - Ep 118TakeawayTune in as Emily shares:* that she'd blocked out a memory of being bitten by a tick at the age of six; she was bitten again at the age of 12, alongside having confirmed EBV* what her initial symptoms were like* how she was overlooked because of her age and gender — and initially put on birth control to control her “hormones”* that she finally found a Lyme-literate NP in her home state when in college — and received the diagnosis of Lyme and tick-borne illnesses at the age of 19* her additional diagnoses: POTS/dysautonomia, Hashimoto's disease, CIDP (chronic inflammatory demyelinating neuropathy), C-PTSD, and Gilbert's syndrome* that she went to see Dr. Casey Kelley after hearing her episode of the show!* how her lived experience informs the creation of adaptive devices and wearables for Mighty Well* how she was able to embody her identity as a disabled person — coming from a family of athletes* that she had a lot of Lyme support in college, but also felt “othered” in the sense that she had to advocate for her health for the first time* what a typical day was like for her before remission* her rumination on the invisibility of her diagnoses — and their few visible signifiers, which included her PICC line and chest port, as well as her occasional use of a cane* how exhausting it can be to tell people your life story when you live with invisible illness and have to provide validation to others* the epidemic affecting women in healthcare: acute infections, especially those presenting with multiple and varied symptoms — and how important it is to listen to and include women, both in treatment and in research* how her family background in textiles informed the Mighty Well product line* her advice for fellow spoonies and entrepreneurs* why living near the water is so important for her* that she has trained her dog, Olive, as a medical alert service animal* her belief that ketamine therapy saved her life, with regard to the diagnosis of C-PTSD* her endorsement of plant medicines and herbs, and why she has moved in that direction where her ongoing treatment is concerned Get full access to Uninvisible Pod at uninvisiblepod.substack.com/subscribe
Guest: Michael T. Pulley, MD PhD The chronic inflammatory demyelinating polyneuropathy (CIDP) treatment objective for disease stabilization and long-term maintenance is to get the patient to a normal functioning state with as few fluctuations and relapses as possible. Dive in with Dr. Qihua Fan, Assistant Professor in the Department of Neurology at Virginia Commonwealth University.
Martine Hackett returns with a new season of “Untold Stories: Life with a Severe Autoimmune Condition.” Hear from people forging new paths after diagnosis, and learn how they build community and evolve their outlook on life. We'll learn more about life with myasthenia gravis (MG) and chronic inflammatory demyelinating polyneuropathy (CIDP), and even hear from people living with autoimmune conditions such as pemphigus. Join us starting Wednesday, December 27th.See omnystudio.com/listener for privacy information.
To know Jenny Tooley is to love her! Jenny is one of the funniest, most genuine people you will ever meet. She is full of laughter and always up for a good dress-up theme day. She is the ultimate youth worker! Jenny and John have three children: Cody, Kyle, and Lindsey. When Lindsey was in high school, she had a strange thing happen physically. She started limping and having pains that did not have an explanation. After several doctor and specialist visits, they finally realized she had CIDP, an autoimmune disease. Lindsey went through a lot of turmoil throughout the rest of her high school years often having to get IVIG blood treatments. However, they had many "God-experiences" in this journey, including a visit from possible angels! The story you'll hear in this episode reminds us that our help comes from the Lord, especially in seasons of trouble and trial. God is good, all the time. Deuteronomy 31:8 Proverbs 3:27 Exodus 14:14 Psalm 46:10 Psalm 121 Isaiah 41:10 Mercy Me- "Even If" #afrayedknotpodcast #CIPD #TribeofFriends #EvenIf
Welcome to Living Well with MS, where we are pleased to welcome Professor Richard Burt as our guest! Professor Burt is a leading expert in hematopoietic stem cell transplantation (HSCT) for autoimmune diseases including MS and has been awarded a number of prestigious accolades. Watch this episode on YouTube here. Keep reading for the key episode takeaways and Professor Burt's bio. Questions and Timestamps 02:35 Could you introduce yourself and tell us about your work with patients with autoimmune conditions and MS? 12:03 What do you think about the idea of flipping the model and offering the most aggressive treatment options to patients first? 16:27 What are the risks of HSCT? 21:18 Can you tell us about the costs associated with stem cell transplantation? 24:13 What type of patients respond best to HSCT? 31:16 Do you see a future where doctors are trained in multiple fields and understand the whole picture of autoimmunity? 38:10 If someone's interested in exploring HSCT, what should they look for in a clinic or physician? 41:47 HSCT has a high upfront cost but how does that compare to being on an MS drug for years or perhaps a lifetime? 53:50 The Dalai Lama wrote the introduction to your book 'Everyday Miracles'. How did that come about? Selected Key Takeaways Randomised controlled trial results for HSCT have been very positive 05:12 “In a randomised trial, [HSCT] was just hands down much better than any [other] drug. All the drugs you use for MS are based on approval for slowing disease activity. That is slowing the number of relapses or slowing the rate of progression of disability but not stopping it or not reversing it. Often you stay on these drugs indefinitely. A transplant, on the other hand, is a one-time treatment and afterwards, you get better, your neurologic disability reverses, nothing else had done that.” It's important to consider the disease trajectory, risks, and benefits of stem cell transplants. 14:02 “MS causes accelerated loss of brain volume, that is brain atrophy. Unfortunately, as we age, we get brain atrophy and a normal, very low, but normal decline. But once you get MS, that decline takes a much sharper drop, and you're losing neural function a lot faster than normal ageing. For some reason, that's not viewed as a sub-acute or semi-emergency situation that you want to reverse. Traditional drugs have mostly just slowed that rate of decline, but it's still faster than what happens with normal ageing. I would think a more aggressive approach up front would be wise, but you always have to remember [the] risk–benefit. If we could do a stem cell transplant with zero risk of mortality, I would say absolutely for everybody. But you can't do that right now.” A medical speciality and institute for autoimmunology could help push the field forward 34:20 “There are 80 different autoimmune diseases that I can think of offhand. They're all “homeless” in different departments like Crohn's disease [which is] in gastroenterology, Scleroderma [which] is in rheumatology, and multiple sclerosis [which] is in neurology. They're all separated [into] different areas. If there was a better organisation, beginning at a federal level with a national institute of autoimmune diseases that supports centres of excellence around the country, that would really help this go forward.” Want to learn more about living a full and happy life with multiple sclerosis? Sign up to our newsletter to hear our latest tips. More info and links: Visit Professor Burt's website Read Professor Burt's new book on HSCT for autoimmune diseases ‘Everyday Miracles' Check out Professor Burt's medical textbook ‘Hematopoietic Stem Cell Transplantation and Cellular Therapies for Autoimmune Diseases' Find out more about the StarMS trial in the UK New to Overcoming MS? Visit our introductory page Connect with others following Overcoming MS on the Live Well Hub Visit the Overcoming MS website Follow us on social media: Facebook Instagram YouTube Pinterest Don't miss out: Subscribe to this podcast and never miss an episode. Listen to our archive of Living Well with MS episodes here. If you like Living Well with MS, please leave a 5-star review. Feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org. Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. Support us: If you enjoy this podcast and want to support the ongoing work of Overcoming MS, we would really appreciate it if you could leave a donation here. Every donation, however small, helps us to share the podcast with more people on how to live well with MS. Professor Richard Burt's bio: Professor Richard Burt is a Fulbright Scholar, Professor of Medicine at Scripps Health Care, tenured retired Professor of Medicine at Northwestern University, and CEO of Genani Biotechnology. He endeavored for 35 years, first with animal models and then with some of the world's first clinical trials, to bring the field of stem cell and cellular therapy to the patients' bedsides. Publishing Professor Burt has published more than 145 first-author articles and is the editor of four medical textbooks. He was the first Autoimmune Committee Chairperson for the International Bone Marrow Transplant Registry (IBMTR) and was the principal investigator of a National Institutes of Health (NIH) $10 million multicenter contract to develop stem cell clinical trials for autoimmune diseases. Hematopoietic stem cell transplants Professor Burt performed America's first hematopoietic stem cell transplant (HSCT) for multiple sclerosis (MS), systemic lupus erythematosus (SLE), Crohn's disease (CD), stiff person syndrome (SPS), and chronic inflammatory demyelinating polyneuropathy (CIDP) and published the world's first randomised clinical stem cell transplantation trials for systemic sclerosis and multiple sclerosis. Awards and achievements He has been awarded the Leukemia Scholar of America, the Lupus Foundation of America Fidelitas Award, the van Bekkum Award by the European Society for Blood and Marrow Transplantation, the Distinguished Clinical Achievement Award by the Clinical Research Forum, and the European Group for Blood and Marrow Transplantation Clinical Achievement Award. Professor Burt was presented in Vatican City, Rome, with the “Keys to the Vatican,” was a speaker at the Festival of Thinkers in Leadership in Healthcare in the United Arab Emirates and chaired the biotechnology session at the Baku Azerbaijan International Humanitarian Forum. Professor Burt was recognised by Science Illustrated for accomplishing one of the top 10 medical breakthroughs for the next 10 years and by Scientific American as one of the top 50 individuals for improving humanity and outstanding leadership.
In this special bonus episode, we'll spotlight one of the many rare conditions that deserves more attention and resources. Chronic inflammatory demyelinating polyneuropathy, more commonly known as CIDP, is a rare neurological condition that causes progressive weakness, impaired mobility, and reduced sensation in the arms and legs. Guests, Scott and Crystal, discuss how each of their lives were drastically impacted by CIDP. When Scott, a choreographer, was diagnosed, he had to learn to channel his creativity into new mediums. While Crystal, a former pharmaceutical executive who was well-versed in rare conditions, found herself diagnosed with one. Despite their different backgrounds, they've both found that compassion, community, and continually engaging in proper care has taught them how to cope with the adjustments they have had to make in their lives.See omnystudio.com/listener for privacy information.
Episode #263. Delve into the complex world of neurodegenerative diseases in this evidence-loaded episode with Drs Dean and Ayesha Sherzai. Unpack the current scientific understanding of diseases like Alzheimer's and Parkinson's, bust popular food myths related to brain health, and discover actionable lifestyle tips for long-term brain health. Join us on this evidence-based journey that blends science with practical, real-life advice. Specifically, we discuss: Intro (00:00) Drs. Ayesha and Dean play True or False (04:11) Is amyloid plaque the primary cause of Alzheimer's? (05:47) Whole grains, gluten, and brain health (07:11) Artificial intelligence for Alzheimer's disease (14:11) Drs. Ayesha and Dean on Melbourne (17:11) Is olive oil good for brain health? (20:13) What's the beef with red meat? (24:32) Keeping the brain healthy with omega 3 fatty acids (35:25) APOE4 and omega 3 supplementation (48:27) Cognitive changes in midlife (54:47) Reaction to Dr. Michael Klapper's U-turn on omega 3 supplementation (59:10) Facts on choline (1:02:15) Understanding neurodegenerative diseases (1:07:34) Inheriting frontotemporal dementia: what are your chances? (1:17:40) Lifestyle vs. genetics: debunking myths about dementia risk (1:20:21) Healthy habits for a healthy brain (1:27:56) Close relationships & cognitive resilience prevent dementia (1:36:36) Understanding amyloid plaques and Alzheimer's progression (1:49:50) Amyloid hypothesis under scrutiny (1:59:28) Biomarkers and cutting-edge techniques for Alzheimer's detection (2:06:08) How to prevent cognitive decline (2:20:49) Homocysteine, CRISPR, and the future of personalized medicine (2:23:20) Huntington's disease and Parkinson's disease (2:29:12) Depression and anxiety (2:44:36) Chronic inflammatory demyelinating polyneuropathy (CIDP) & Guillain-Barré (2:50:00) Unpacking Multiple Sclerosis (MS) (2:55:146) Outro (3:05:30) To connect with Drs Ayesha and Dean Sherzai, you can find them on Instagram, Facebook, Twitter, and TikTok. You can also visit their website, https://thebraindocs.com/, to discover brain health resources and subscribe to their newsletter, a weekly collection of the best evidence on brain health. Make sure to check out their podcast, The Brain Health Revolution, for more audio deep dives. If you haven't already, make sure to listen to Drs Dean and Ayesha Sherzai's past episodes on The Proof, where we delve into a variety of brain health topics. Find the full catalogue here. Make sure to also check out the full show notes for supporting studies and more insights. Enjoy, friends. Simon Want to support the show? The best way to support the show is to use the products and services offered by our sponsors. To check them out, and enjoy great savings, visit theproof.com/friends. You can also show your support by leaving a review on the Apple Podcast app and/or sharing your favourite episodes with your friends and family. Simon Hill, MSc, BSc (Hons) Creator of theproof.com and host of The Proof with Simon Hill Author of The Proof is in the Plants Watch the episodes on YouTube or listen on Apple/Spotify Connect with me on Instagram, Twitter, and Facebook Nourish your gut with my Plant-Based Ferments Guide Download my complimentary Two-Week Meal Plan and high protein Plant Performance recipe book
The Root Cause Medicine Podcast is created by Rupa Health, the best way to order, track & manage results from 30+ lab companies in one place for free. The Root Cause Medicine Podcast is a weekly one-on-one conversation with renowned medical experts, specialists, and pioneers who are influencing the way we look at our health and wellbeing. This week we're joined by Dr. Richard Burt, Chief of the Division of Immunotherapy, Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, Illinois. In this episode, Dr. Richard Burt shares his insights on hematopoietic stem cell transplant (HSCT) for autoimmune disorders. For thirty-five years, Dr. Burt dedicated himself to advancing stem cell and cellular therapy, beginning with animal models and, later, some of the world's first clinical trials. He authored over 145 articles, mostly as the first author, and edited four medical textbooks. As the first Autoimmune Committee Chairperson for the International Bone Marrow Transplant Registry (IBMTR), he led the way in developing stem cell clinical trials for autoimmune diseases, securing a National Institute of Health (NIH) $10,000,000 multi-center contract. Dr. Burt performed America's first hematopoietic stem cell transplant (HSCT) for multiple sclerosis (MS), systemic lupus erythematosus (SLE), Crohn's disease (CD), stiff person syndrome (SPS), and chronic inflammatory demyelinating polyneuropathy (CIDP). He also published the world's first randomized clinical stem cell transplantation trials for systemic sclerosis and multiple sclerosis. Dr. Burt's pioneering stem cell work earned him recognition as one of the top 50 people in the world for improving humanity by Scientific American in 2006, along with A1 Gore and Steve Jobs. In 2011, Science Illustrated recognized his stem cell work as one of the top 10 advances of the decade. Key Takeaways: What is a hematopoietic stem cell transplant? Hematopoietic stem cell transplantation (HSCT) is a medical procedure where multipotent stem cells are transplanted into a patient, typically from bone marrow, peripheral blood, or umbilical cord blood. These cells can replicate and produce new, healthy blood cells, which can rejuvenate or repair damaged tissue in different organs, and also help fight viruses and foreign tissue. While leukemia is caused by defects in the blood stem cells themselves, autoimmune diseases arise from defects in the immune cells produced by these stem cells. To treat autoimmune diseases, specialists target the effector cells responsible for the disease and eliminate them, then quickly regenerate healthy cells from the blood stem cell. By using HSCT to replace damaged or defective cells with healthy ones, physicians hope to mitigate the symptoms of autoimmune disorders and promote long-term recovery. This innovative approach to treatment is still undergoing testing and refinement, but it shows great promise in the fight against these debilitating diseases. Finding the optimal transplant regimen for autoimmune diseases If your regimen is too strong, whether it's myeloablative or non-myeloablative, you can have more toxicity and problems. If it's too weak, it's not going to be effective. And so you've got to find that right regimen. When finding the optimal transplant regimen for autoimmune diseases, the aim is to develop a treatment plan that maximizes the benefits of the transplant while minimizing the risks and complications associated with it. An optimal transplant regimen for autoimmune diseases involves selecting the appropriate donor, considering the type of transplant, choosing the right conditioning regimen, and determining the timing and dosing of immunosuppressive medications. Financial toxicity in American healthcare systems Financial toxicity is a growing concern in America, particularly in medical treatments. Unfortunately, this often leads to patients being prescribed expensive treatments that may not be the best option for their specific needs. To achieve successful outcomes with hematopoietic stem cell transplantation, two key factors need to be considered: patient selection and the conditioning regimen used. However, due to the financial pressures facing healthcare providers and institutions, specialists may feel obligated to prescribe expensive treatments, even if they are not necessarily the most appropriate option for the patient. This can be a major source of frustration for patients, who may struggle to afford these treatments or may not receive the care that they truly need. Dr. Burt emphasizes the importance of physicians taking responsibility for their patient's care and being mindful of the financial implications of their recommendations. Rather than being driven solely by financial considerations, doctors should focus on providing the best possible care for their patients. By doing so, they can help to mitigate the effects of financial toxicity and ensure that patients receive the treatments that are best suited to their individual needs.
This week we will discuss CIDP with Ashley. Ashley also know as "Wheelinwoman" on Instagram and TikTok. "I have a few rare diseases that caused me to have health issues including a spinal cord injury which left me a quadriplegic. I spread awareness and education on life with Guillian Barre syndrome and CIDP. And share my journey wheelin' through life as a young woman!" Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare autoimmune disorder that affects the peripheral nervous system. It is characterized by chronic inflammation of the nerves and destruction of the myelin sheath that surrounds and protects the nerves, leading to muscle weakness and sensory disturbances. CIDP can affect people in different ways, and the symptoms can vary from person to person. Some people may experience mild symptoms, while others may experience more severe symptoms. Common symptoms of CIDP include Muscle weakness, particularly in the arms and legs Tingling or numbness in the hands and feet Loss of reflexes Difficulty walking Fatigue Pain in the limbs Difficulty with coordination and balance The severity and duration of symptoms can also vary, with some people experiencing intermittent episodes of symptoms while others experience more persistent symptoms. Treatment for CIDP typically involves immunosuppressive therapies to reduce inflammation and protect the nerves, but the specific treatment approach will depend on the individual case and the severity of the symptoms.
Robert, a self-described Atheist, was diagnosed with CIDP as a baby. CIPD is a rare and incapacitating disorder, which confined him to a wheelchair and left him living in children's hospitals throughout his childhood. Despite medical professionals deeming it impossible for him to walk, Robert defied the odds and achieved a miraculous recovery. His family believes this recovery may be linked to a vision of the Virgin Mary that Robert experienced shortly before. This episode delves into Robert's extraordinary journey growing up with significant challenges, and the paranormal events he encountered during this time and continues to experience to this day. Additionally, it explores how these phenomena affected the beliefs of his family members in various ways, and how despite witnessing what many people would consider miracles, Robert remains an Atheist to this day. To see photos related to this episode, click here Subscribe to Otherworld on Patreon for exclusive content and bonus interviews Check out our Merch Follow us on: Instagram, TikTok, Twitter If you have experienced something paranormal or unexplained, email us your full story at stories@otherworldpod.com To learn more about listener data and our privacy practices visit: https://www.audacyinc.com/privacy-policy Learn more about your ad choices. Visit https://podcastchoices.com/adchoices
Dr. Peter Van Den Bergh discusses his paper, "European Academy of Neurology/Peripheral Nerve Society guideline on diagnosis and treatment of chronic inflammatory demyelinating polyradiculoneuropathy: Report of a joint Task Force-Second revision". Show references: https://pubmed.ncbi.nlm.nih.gov/34085743/
Dr. Gordon Smith talks with Dr. Peter Van Den Bergh about updated guidelines prepared under the auspices of the PNS and EAN on CIDP. Read the related articles published in each of their respective journals.
Dennis no longer has any symptoms of a rare autoimmune disease, chronic inflammatory demyelinating polyneuropathy (CIDP) after suffering for over 5 years. He has been featured on Muscle And Fitness Magazine. Timestamps: 00:00 Trailer 00:51 Introduction 02:55 Calves paralyzed 04:49 Chronic inflammatory demyelinating polyneuropathy (CIDP) diagnosis 06:23 Infusions for CIDP 08:52 Aftermath of CIDP diagnosis 11:22 Facebook support groups 14:37 Side effect profile on infusions 16:15 Neurologist recommendation for low-inflammatory diet and starting the carnivore diet 18:03 Getting off meds 18:54 Trying to get into ketosis 21:19 Immediate improvement after carnivore diet 23:16 Day-to-day experience prior to treatment 25:22 MRIs, spinal tap results 27:34 Neurologist follow-up after carnivore diet 29:15 Never stop training 32:16 Diet today 34:19 Fat to protein macro ratios 36:28 Sharing results with the support community 37:44 Frustration with current medical paradigm 39:42 Mental health on carnivore diet 41:59 Online support groups' reception of carnivore diet 45:13 Red meat and quality of life 47:22 Triggers out of remission, stress 49:04 Looking better now than ten years ago See open positions at Revero: https://jobs.lever.co/Revero/ Join Carnivore Diet for a free 30 day trial: https://carnivore.diet/join/ Book a Carnivore Coach: https://carnivore.diet/book-a-coach/ Carnivore Shirts: https://merch.carnivore.diet Subscribe to our Newsletter: https://carnivore.diet/subscribe/ . #revero #shawnbaker #Carnivorediet #MeatHeals #HealthCreation #humanfood #AnimalBased #ZeroCarb #DietCoach #FatAdapted #Carnivore #sugarfree