Podcasts about Mastocytosis

We're diving into the world of mast cell diseases, equipping you with the knowledge and tools to navigate this condition. Whether you're a patient, healthcare professional, or a caregiver, this conversation, led by Jessica Fraser, Executive Director of the Mast Cell Disease Society, will guide you on how to find resources, support, and community. Resources to keep you in the know:The Mast Cell Disease SocietyWhat Are Mast CellsEmergency Room Response Plan Find a Physician CME OpportunitiesPatient Guides and Tool Kits Support Groups You can find FAACT's Roundtable Podcast on Apple Podcasts, Pandora, Spotify, Podbay, iHeart Radio, or wherever you listen to podcasts.Follow us on Facebook, Instagram, BlueSky, Threads, LinkedIn, Pinterest, TikTok, and YouTube.Sponsored by: Blueprint MedicinesThanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

This podcast explores Mast Cell Disease, and we're learning more about this disease directly from someone living with it. Our guest, Rachael Rose, is a patient living with Indolent Systemic Mastocytosis. She will share her journey from diagnosis to daily living with this condition. Resources to keep you in the know:Systemic Mastocytosis - All Variants (TMS for A Cure)You can find FAACT's Roundtable Podcast on Apple Podcasts, Pandora, Spotify, Podbay, iHeart Radio, or wherever you listen to podcasts.Follow us on Facebook, Instagram, BlueSky, Threads, LinkedIn, Pinterest, TikTok, and YouTube.Sponsored by: Blueprint MedicinesThanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

We're learning about Systemic Mastocytosis (SM) with Dr. Nathan Boggs, Allergy Division Director at Walter Reed National Military Medical Center, whose research focuses on SM. Dr. Boggs shares more about understanding symptoms, if you may have SM, and how to support people living with it.Resources to keep you in the know:American Academy of Allergy Asthma and Immunology (AAAAI) - Systemic MastocytosisSystemic Mastocytosis - All Variants (TMS for A Cure)You can find FAACT's Roundtable Podcast on Apple Podcasts, Pandora, Spotify, Podbay, iHeart Radio, or wherever you listen to podcasts.Follow us on Facebook, Instagram, BlueSky, Threads, LinkedIn, Pinterest, TikTok, and YouTube.Sponsored by: Blueprint Medicines Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Featuring perspectives from Dr Prithviraj Bose and Dr Andrew T Kuykendall, including the following topics: Systemic Mastocytosis — Dr Bose (0:00) Myelofibrosis — Dr Kuykendall (24:46) CME information and select publications

Clinical investigators discuss available data guiding the management of systemic mastocytosis and myelofibrosis.  CME information and select publications here.

Listen in as Jonathan A. Bernstein, MD, and Ryan Haumschild, PharmD, MS, MBA, CPEL, discuss how to manage the multidisciplinary care of patients with systemic mastocytosis (SM) from both the allergy/immunology and pharmacy perspective, including:Strategies to better identify patients presenting with features of SM to facilitate timely diagnosisCurrent guideline-recommended treatment approachesEmerging data on new targeted agents for SMPharmacist-led strategies to help patients achieve better outcomes (e.g., specialist referral, polypharmacy counseling, and anaphylaxis education)PresentersJonathan A. Bernstein, MDProfessor of MedicineDivision of Rheumatology, Allergy and ImmunologyDepartment of Internal MedicineUniversity of Cincinnati College of MedicinePartner Advanced Allergy Services, LLCPartner Bernstein Clinical Research Center, LLCCincinnati, OhioRyan Haumschild, PharmD, MS, MBA, CPELVice President of Pharmacy, AmbulatoryEmory HealthcareWinship Cancer InstituteAtlanta, GeorgiaFull link to program page:https://bit.ly/3HcA8z2

In this episode, we discussed the management of systemic mastocytosis with Dr. Daniel DeAngelo from the Dana Farber Cancer Institute. Here are the key studies we discussed:Midostaurin https://www.nejm.org/doi/10.1056/NEJMoa1513098?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200www.ncbi.nlm.nih.govAvapritinibEXLPORER study: https://www.nature.com/articles/s41591-021-01538-9PATHFINDER study: https://www.nature.com/articles/s41591-021-01539-8Bezuclastinib: APEX trial: https://ashpublications.org/blood/article/144/Supplement%201/659/530240/Apex-Part-1-Updated-Assessment-of-BezuclastinibHSCT for Advanced SM: https://ascopubs.org/doi/10.1200/JCO.2014.55.2018

In Module 2 of this podcast series, discover strategies for developing personalized management plans for patients with systemic mastocytosis (SM), a rare disease with a wide spectrum of symptoms. This episode highlights the latest advancements in treatment, including tyrosine kinase inhibitors (TKIs), supportive care interventions, and approaches to tailoring therapies based on disease subtype and symptom burden to improve patient outcomes and quality of life. Listen now! Click here to claim credit for this activity: bit.ly/43VoFNP

In Module 1 of this podcast series, explore the challenges of diagnosing systemic mastocytosis (SM), a rare and often underdiagnosed mast cell disease. This episode delves into the diverse symptoms of SM—ranging from anaphylaxis and cutaneous issues to gastrointestinal, neuropsychiatric, and musculoskeletal manifestations—and provides essential insights into recognizing the signs, confirming the diagnosis, and improving patient outcomes through early intervention. Listen now! Click on the link to claim your credit now: bit.ly/3Y3ivHM Click here to continue listening to Module 2 of this podcast series: bit.ly/43VoFNP

CME credits: 0.50 Valid until: 28-02-2026 Claim your CME credit at https://reachmd.com/programs/cme/diagnosis-and-treatment-of-systemic-mastocytosis-with-an-associated-hematologic-neoplasm/32715/ The identification of KIT D816V mutation as a key driver for the expansion and accumulation of neoplastic mast cells in systemic mastocytosis (SM) has significantly improved the diagnosis, subclassification, and management of SM. Moreover, the advent of novel targeted therapies has dramatically changed the treatment landscape. However, challenges persist for community clinicians due to the low prevalence of SM and its vague and wide spectrum of clinical features. Expanded knowledge of the recommended pathology and laboratory evaluation for the diagnosis and subclassification of the disease is needed to shorten delays in diagnosis and delivery of optimal care. Tune in and find out more about the management of SM and the latest clinical evidence and guideline recommendations for the use of tyrosine kinase inhibitors (TKIs) and learn about the role played by pathologists in the identification and diagnosis of SM, which ultimately guides treatment selection.

CME credits: 0.50 Valid until: 28-02-2026 Claim your CME credit at https://reachmd.com/programs/cme/differential-diagnosis-of-indolent-systemic-mastocytosis/32713/ The identification of KIT D816V mutation as a key driver for the expansion and accumulation of neoplastic mast cells in systemic mastocytosis (SM) has significantly improved the diagnosis, subclassification, and management of SM. Moreover, the advent of novel targeted therapies has dramatically changed the treatment landscape. However, challenges persist for community clinicians due to the low prevalence of SM and its vague and wide spectrum of clinical features. Expanded knowledge of the recommended pathology and laboratory evaluation for the diagnosis and subclassification of the disease is needed to shorten delays in diagnosis and delivery of optimal care. Tune in and find out more about the management of SM and the latest clinical evidence and guideline recommendations for the use of tyrosine kinase inhibitors (TKIs) and learn about the role played by pathologists in the identification and diagnosis of SM, which ultimately guides treatment selection.

Scientists have discovered that a genetic variant called KIT M541L may play an important role in a rare immune disorder known as #mastocytosis. The findings may help explain why some #patients develop more severe forms of the disease. Understanding Mastocytosis Mastocytosis is a condition where the body produces too many mast cells. These cells are part of the immune system and help the body fight infections, but in excess, they release chemicals that can cause itching, swelling, and even serious organ damage. There are two main types of mastocytosis. The first is cutaneous mastocytosis, which mostly affects the skin. The second is systemic mastocytosis, a more serious form where mast cells build up in internal organs like the liver, spleen, and bone marrow. The disease is linked to mutations in the KIT gene, which regulates mast cell growth. The most studied mutation is KIT D816V, but recent research has highlighted another variant, KIT M541L. The Study: Impact of KIT M541L Variant A team of researchers at the National Institutes of Health (NIH), led by first author Luisa N. Dominguez Aldama and corresponding author Melody C. Carter, aimed to better understand the prevalence and impact of the KIT M541L genetic variant in mastocytosis patients. The study published in Oncotarget on July 22, 2024, titled “Prevalence and impact of the KIT M541L variant in patients with mastocytosis,” examined the presence of the KIT M541L gene variant in 100 patients with mastocytosis, both adults and children, alongside 500 healthy individuals. By comparing these two groups, the researchers wanted to see if there was a relation between the KIT M541L variant and mastocytosis severity. Full blog - https://www.oncotarget.org/2025/01/15/mastocytosis-key-insights-into-kit-m541l-gene-mutation/ Paper DOI - https://doi.org/10.18632/oncotarget.28614 Correspondence to - Melody C. Carter - mcarter@niaid.nih.gov Video short - https://www.youtube.com/watch?v=zpiBbSfkTX4 Sign up for free Altmetric alerts about this article - https://oncotarget.altmetric.com/details/email_updates?id=10.18632%2Foncotarget.28614 Subscribe for free publication alerts from Oncotarget - https://www.oncotarget.com/subscribe/ Keywords - cancer, mastocytosis, KIT M541L, KIT D816V, adults, pediatrics About Oncotarget Oncotarget (a primarily oncology-focused, peer-reviewed, open access journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. Oncotarget is indexed and archived by PubMed/Medline, PubMed Central, Scopus, EMBASE, META (Chan Zuckerberg Initiative) (2018-2022), and Dimensions (Digital Science). To learn more about Oncotarget, please visit https://www.oncotarget.com and connect with us: Facebook - https://www.facebook.com/Oncotarget/ X - https://twitter.com/oncotarget Instagram - https://www.instagram.com/oncotargetjrnl/ YouTube - https://www.youtube.com/@OncotargetJournal LinkedIn - https://www.linkedin.com/company/oncotarget Pinterest - https://www.pinterest.com/oncotarget/ Reddit - https://www.reddit.com/user/Oncotarget/ Spotify - https://open.spotify.com/show/0gRwT6BqYWJzxzmjPJwtVh MEDIA@IMPACTJOURNALS.COM

Mariana Castells, MD, PhD - Rare But Highly Significant: Best Practices in Recognizing and Diagnosing Systemic Mastocytosis

Mariana Castells, MD, PhD - Rare But Highly Significant: Best Practices in Recognizing and Diagnosing Systemic Mastocytosis

Mariana Castells, MD, PhD - Rare But Highly Significant: Best Practices in Recognizing and Diagnosing Systemic Mastocytosis

Mariana Castells, MD, PhD - Rare But Highly Significant: Best Practices in Recognizing and Diagnosing Systemic Mastocytosis

Frank Siebenhaar, PD / Vito Sabato, MD, PhD - Optimising Outcomes in Indolent Systemic Mastocytosis: A Comprehensive Review of Best Practices Across the Patient Journey

Frank Siebenhaar, PD / Vito Sabato, MD, PhD - Optimising Outcomes in Indolent Systemic Mastocytosis: A Comprehensive Review of Best Practices Across the Patient Journey

Frank Siebenhaar, PD / Vito Sabato, MD, PhD - Optimising Outcomes in Indolent Systemic Mastocytosis: A Comprehensive Review of Best Practices Across the Patient Journey

Frank Siebenhaar, PD / Vito Sabato, MD, PhD - Optimising Outcomes in Indolent Systemic Mastocytosis: A Comprehensive Review of Best Practices Across the Patient Journey

Frank Siebenhaar, PD / Vito Sabato, MD, PhD - Optimising Outcomes in Indolent Systemic Mastocytosis: A Comprehensive Review of Best Practices Across the Patient Journey

Frank Siebenhaar, PD / Vito Sabato, MD, PhD - Optimising Outcomes in Indolent Systemic Mastocytosis: A Comprehensive Review of Best Practices Across the Patient Journey

This episode was recorded before July 31, 2024. Professor Marcus Maurer and Dr Sigurd Broesby-Olsen discuss similarities and differences between urticaria and mastocytosis, two mast cell diseases. They then turn their attention to treatment, sharing their thoughts on ‘killing' mast cells and the development of more targeted and less toxic therapies. Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here. Additional resources for this episode: Mast cell silencing: A novel therapeutic approach for urticaria and other mast cell-mediated diseases; Mast cell–targeting therapies in mast cell activation syndromes; and Tyrosine kinase inhibitors for the treatment of indolent systemic mastocytosis: Are we there yet? Access additional resources by signing up to Medthority and to be notified for future ‘All Things Urticaria' podcast episodes! For more information about the UCARE/ACARE network and its activities, please visit: UCARE Website, UCARE LevelUp Program, ACARE Website, UCARE 4U Website, UDAY Website, CRUSE Control App and CURE Registry. 

BUFFALO, NY- July 24, 2024 – A new #research paper was #published in Oncotarget's Volume 15 on July 22, 2024, entitled, “Prevalence and impact of the KIT M541L variant in patients with mastocytosis.” Activating mutations in KIT, particularly D816V, have been associated with mastocytosis. Additionally, expression of heterozygous KIT M541L has been primarily reported in patients with pediatric mastocytosis. In this new study, researchers Luisa N. Dominguez Aldama, Eric Karlins, Xiaoping Sun, Daniel Veltri, Hirsh D. Komarow, Irina Maric, Dean D. Metcalfe, and Melody C. Carter from the National Institutes of Health examined the prevalence of this variant in pediatric and adult patients with mastocytosis (n = 100) compared to ancestry-matched 1000 genomes controls (n = 500) and patients with idiopathic anaphylaxis (n = 23). They then compared clinical symptoms and laboratory data on patients with systemic and cutaneous mastocytosis and bone marrow histopathology on a matched cohort with and without the KIT M541L variant. “We found a significant association between KIT M541L genotype and the diagnosis of mastocytosis.” Overall, the KIT M541L variant was identified in 19 individuals; the majority were diagnosed with systemic mastocytosis (89.4%) with an associated KIT D816V mutation. There were no significant differences in peripheral blood parameters between groups. Patients with mastocytosis carrying the KIT M541L variant did not demonstrate significant differences in symptomatology compared to a matched reference cohort (n = 13/81) without KIT M541L. In patients with idiopathic anaphylaxis, no significant associations were observed. “To our knowledge, this is the first case/control study to show a significant genetic association with mastocytosis at the KIT M541L locus.” DOI - https://doi.org/10.18632/oncotarget.28614 Correspondence to - Melody C. Carter - mcarter@niaid.nih.gov Video short - https://www.youtube.com/watch?v=zpiBbSfkTX4 Sign up for free Altmetric alerts about this article - https://oncotarget.altmetric.com/details/email_updates?id=10.18632%2Foncotarget.28614 Subscribe for free publication alerts from Oncotarget - https://www.oncotarget.com/subscribe/ Keywords - cancer, mastocytosis, KIT M541L, KIT D816V, adults, pediatrics About Oncotarget Oncotarget (a primarily oncology-focused, peer-reviewed, open access journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. Oncotarget is indexed and archived by PubMed/Medline, PubMed Central, Scopus, EMBASE, META (Chan Zuckerberg Initiative) (2018-2022), and Dimensions (Digital Science). To learn more about Oncotarget, please visit https://www.oncotarget.com and connect with us: Facebook - https://www.facebook.com/Oncotarget/ X - https://twitter.com/oncotarget Instagram - https://www.instagram.com/oncotargetjrnl/ YouTube - https://www.youtube.com/@OncotargetJournal LinkedIn - https://www.linkedin.com/company/oncotarget Pinterest - https://www.pinterest.com/oncotarget/ Reddit - https://www.reddit.com/user/Oncotarget/ Spotify - https://open.spotify.com/show/0gRwT6BqYWJzxzmjPJwtVh MEDIA@IMPACTJOURNALS.COM

Have you ever searched for information on mast cell disease only to be overwhelmed by alarming topics like cancer and stem cell transplants? Then this episode is for you! Our guest, Dr. Marina Kremyanskaya, joins hosts Dr. G and Kortney to provide insight into the progression of systemic mastocytosis and the available treatment options to improve quality of life and extend lifespan. Dr. Kremyanskaya distinguishes between indolent and aggressive systemic mastocytosis, shedding light on warning signs indicating disease progression. She offers a detailed exploration of treatment approaches for aggressive mastocytosis, highlighting the evolving treatment plan and differing prognosis from indolent cases. Additionally, Dr. Kremyanskayaa delves into the concept of myeloid malignancy, providing insight into the more challenging aspects of advanced systemic mastocytosis progression. We also dive into stem cell transplants as a potential cure for advanced systemic mastocytosis. Dr.  Kremyanskaya explains why this option is not immediately pursued due to the complexity of the procedure and the risk of graft-versus-host disease (GvHD), a potential complication associated with stem cell transplants. What we cover in this episode about advanced systemic mastocytosis: Understanding indolent systemic mastocytosis Signs indicating progression to advanced mastocytosis. Treatment strategies for aggressive mastocytosis and associated prognosis. Explanation of advanced systemic mastocytosis with or without hematologic malignancy. Definition of myeloid malignancy. Understanding the impact of advanced systemic mastocytosis on organs. The effectiveness of early treatment in slowing down the progression. The role of stem cell transplant in treating mastocytosis. Stem cell transplant and associated risks Role of chemotherapy in stem cell transplant. Overview of graft-versus-host disease. Addressing whether stem cell transplant serves as a cure for mast cell disease. Resources about mast cell disease: Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/ What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/ What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/ The Mast Cell Disease Society: https://tmsforacure.org/

CME credits: 0.50 Valid until: 24-04-2025 Claim your CME credit at https://reachmd.com/programs/cme/managing-indolent-systemic-mastocytosis-a-multidisciplinary-case-review/18089/ New tyrosine kinase inhibitor (TKI) treatment options can significantly reduce symptom burden in patients with moderate to severe indolent systemic mastocytosis (ISM). Studies report that systemic mastocytosis and ISM are often undiagnosed for years. Improve your diagnosis and treatment of ISM by tapping into the expertise of a multidisciplinary team, including allergists, gastroenterologists, and hematologists, and increase your awareness of diagnostic criteria, the varied presentations of ISM, and new treatment options that move beyond traditional anti-mediator therapy.=

CME credits: 0.25 Valid until: 24-04-2025 Claim your CME credit at https://reachmd.com/programs/cme/multidisciplinary-approach-to-diagnosing-and-managing-indolent-systemic-mastocytosis-the-changing-landscape/18090/ Patients with indolent systemic mastocytosis frequently report a symptom burden disproportionate to measurable disease burden. Anti-mediator intervention is not always successful in improving the quality of life of these patients. But the treatment landscape is changing. Join Drs. Cem Akin, Daniel DeAngelo, and Matthew Hamilton offer key clinical insights into this changing standard of care for ISM and discuss why allergists, hematologists, and gastroenterologists are at the vanguard of this change.=

In today's episode with Dr. Arianne Missimer, you'll hear us take a deep dive on: 1. How to combine mindset, nutrition, and movement for emotional and mental well-being. What is the Vagus Nerve? Learn more about the significance of the vagus nerve in rest, digestion, and breathing, considering mindset and neuroscience through Dr. Steven Porges' Polyvagal Theory. How techniques like humming, meditation, and cold showers can enhance the functioning of the vagus nerve and nervous system. Mastocytosis and its impact on mental health, and how combining functional and conventional medicine provides a comprehensive understanding and treatment approach. With a remarkable career spanning over 22 years, Dr. Arianne Missimer has established herself as an eminent figure in the realm of health and wellness. Her impressive credentials include being an esteemed Doctor of Physical Therapy, a Registered Dietitian, a Registered Yoga Teacher, a Mindfulness Educator, an accomplished author, and a cancer survivor. As the visionary Founder of the Movement Paradigm, Dr. Arianne has left an indelible mark on the health field. Her unwavering commitment to excellence has been recognized through a multitude of prestigious awards. Notably, she has been honored with the National Strength and Conditioning Association Sports Medicine Rehabilitation Specialist of the Year, American Dietetic Association Recognized Young Dietitian of the Year, the University of Delaware Outstanding Alumni, Neumann University Physical Therapy Alumni Award, Mainline Today Health Care Hero, and Mainline Today Power Women.

What is it like when an unpredictable disease like systemic mastocytosis forces you to change the trajectory of your life? As we continue to unpack mast cell disease, Dr. G and Kortney wanted to get the patient's perspective on living with such a complex disease. Tammie joins the podcast to discuss her journey battling mastocytosis, a rare condition affecting mast cells in the body. If you ever feel alone on your chronic health journey, know you aren't! Tammie's resilience and wisdom serve as a beacon of hope. We hope this inspires you to approach your health journey with determination and a sense of community.   What we cover in this episode: Tammie's mastocytosis journey The challenges of not getting a proper diagnosis The pros and cons of being able to google medical conditions What do to when a doctor does not want to take you on as a patient  How Tammie separates the disease from her life  How do you navigate work with a chronic disease? Working with a mental health team How do you ask your family/friends for help Patient's relationship with their healthcare team Pros and cons of an online community for chronic disease and the importance of a real-life community   Connect with Tammie online: TikTok https://www.tiktok.com/@rachelllargentphillips Instagram https://www.instagram.com/tammie_rachell/   Resources about mast cell disease: Mast Cell Disease Overview: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/ What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/ What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/ The Mast Cell Disease Society: https://tmsforacure.org/

In this week's episode we'll learn more about rare relapse-initiating stem cells in patients with MDS or AML in complete remission post-transplantation, discuss the role of interferon α in erythropoiesis in sickle cell disease, and learn more about how TNFα promotes clonal dominance of KIT D816V+ cells in mastocytosis.

The basic science of mast cells is the first episode in our 6-part series exploring Mast cell diseases. To start the series, we explore the intricate workings of mast cells by diving into how they work and what happens when something is off balance. Have you ever wondered what releases histamine and how this happens? Then this episode is for you! What we cover in our episode about mast cell disease: What are mast cells, and what do they do? What are the different types of mast cell diseases? Mastocytosis Mast Cell Activation Syndrome Hereditary Alpha-tryptasemia The 7 types of mastocytosis The cause of mast cell disease KIT gene mutation in Mastocytosis More resources about mast cell disease: Mast Cell Disease page: https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/ What is Anaphylaxis? https://allergyasthmanetwork.org/anaphylaxis/ What is Epinephrine? https://allergyasthmanetwork.org/anaphylaxis/what-is-epinephrine/ We thank Blueprint Medicines for sponsoring this podcast.

Dr. Feldman on MENTAL ACCOUNTING - Avapritinib for systemic mastocytosis - IL-17-blockers: smaaaaall risk of IBD - Dermasphere clip show: Episodes 111-119! - Want to donate to the cause? Do so here! http://www.uofuhealth.org/dermasphere Check out our video content on YouTube: https://www.youtube.com/@dermaspherepodcast and VuMedi!: https://www.vumedi.com/channel/dermasphere/ The University of Utah's Dermatology ECHO: ⁠⁠https://physicians.utah.edu/echo/dermatology-primarycare - ⁠⁠Connect with us! - Web: ⁠https://dermaspherepodcast.com/⁠ - Twitter: @DermaspherePC - Instagram: dermaspherepodcast - Facebook: https://www.facebook.com/DermaspherePodcast/ - Check out Luke and Michelle's other podcast, SkinCast! ⁠https://healthcare.utah.edu/dermatology/skincast/⁠ Luke and Michelle report no significant conflicts of interest… BUT check out our friends at: - ⁠Kikoxp.com ⁠(a social platform for doctors to share knowledge) - ⁠https://www.levelex.com/games/top-derm⁠ (A free dermatology game to learn more dermatology!)

In this episode, our guest Maddy shares her inspiring journey of resilience and hope, navigating life with two challenging Chronic Illnesses: Gastroparesis and Systemic Mastocytosis. Diagnosed in 2020 after enduring extensive testing and hospital stays, Maddy sheds light on the complexities of gastroparesis—a condition that paralyses the stomach, affecting both digestion and her large intestine. Bravely opening up about the impact on her life, Maddy discusses the necessity of stepping away from work and enduring a series of restrictive diets, including puree and liquid regimens. She describes her transformative experience of being tube-fed into her small intestine, detailing the newfound energy and mental clarity that has allowed her to return to work part-time after a hiatus of 3.5 years. Maddy also delves into the intricacies of Systemic Mastocytosis, a condition characterised by an excess of mast cells triggering inflammation and allergic reactions. Maddy speaks beautifully about the mental health challenges that come with chronic illnesses as they often bring isolation and overwhelming negatives. Maddy discusses how she copes with this and how she remains positive. Maddy has a sunshiney personality which shines through in the episode. Through her social media accounts, she aims to provide a supportive space for individuals facing chronic and mental illnesses, fostering a sense of community and emphasising the positives in every day. Join us for an uplifting exploration of Maddy's journey, marked by courage, resilience, and the power of community in the face of adversity. Follow our beautiful guest, Maddy : Instagram & YouTube

Frank Siebenhaar, MD - Indolent Isn't Insignificant: Raising Awareness of Systemic Mastocytosis and Its Symptoms

Frank Siebenhaar, MD - Indolent Isn't Insignificant: Raising Awareness of Systemic Mastocytosis and Its Symptoms

Frank Siebenhaar, MD - Indolent Isn't Insignificant: Raising Awareness of Systemic Mastocytosis and Its Symptoms

Frank Siebenhaar, MD - Indolent Isn't Insignificant: Raising Awareness of Systemic Mastocytosis and Its Symptoms

Frank Siebenhaar, MD - Indolent Isn't Insignificant: Raising Awareness of Systemic Mastocytosis and Its Symptoms

Frank Siebenhaar, MD - Indolent Isn't Insignificant: Raising Awareness of Systemic Mastocytosis and Its Symptoms

Dr Gotlib discusses the significance of the FDA approval of avapritinib in indolent systemic mastocytosis, key findings from the PIONEER trial, and the quality of life benefits that avapritinib provides for patients in this population.

With a remarkable career spanning over 22 years, Dr. Arianne Missimer has established herself as an eminent figure in the realm of health and wellness. Her impressive credentials include being an esteemed Doctor of Physical Therapy, a Registered Dietitian, a Registered Yoga Teacher, a Mindfulness Educator, an accomplished author, and a cancer survivor. As the visionary Founder of the Movement Paradigm, Dr. Arianne has left an indelible mark on the health field. Her unwavering commitment to excellence has been recognized through a multitude of prestigious awards. Notably, she has been honored with the National Strength and Conditioning Association Sports Medicine Rehabilitation Specialist of the Year, American Dietetic Association Recognized Young Dietitian of the Year, the University of Delaware Outstanding Alumni, Neumann University Physical Therapy Alumni Award, Mainline Today Health Care Hero, and Mainline Today Power Women. In today's episode with Dr. Arianne Missimer, you'll hear us take a deep dive on: 1. How to combine mindset, nutrition, and movement for emotional and mental well-being. 2. What is the Vagus Nerve? Learn more about the significance of the vagus nerve in rest, digestion, and breathing, considering mindset and neuroscience through Dr. Steven Porges' Polyvagal Theory. 3. How techniques like humming, meditation, and cold showers can enhance the functioning of the vagus nerve and nervous system. 4. Mastocytosis and its impact on mental health, and how combining functional and conventional medicine provides a comprehensive understanding and treatment approach. Order tests through Rupa Health, the BEST place to order functional medicine lab tests from 30+ labs - https://www.rupahealth.com/reference-guide

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/rationale-for-tyrosine-kinase-inhibitors-in-non-advanced-systemic-mastocytosis/15630/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/assessing-response-to-targeted-therapy-in-non-advanced-systemic-mastocytosis-how-to-distinguish-aes-from-disease-symptoms/15632/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/when-best-supportive-care-is-not-enough-who-is-eligible-for-targeted-therapy-in-non-advanced-systemic-mastocytosis/15631/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/who-are-the-key-players-for-a-multidisciplinary-approach-to-diagnosis-and-management-of-non-advanced-systemic-mastocytosis/15629/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/how-do-you-diagnose-and-assess-symptom-burden-when-non-advanced-systemic-mastocytosis-is-suspected/15628/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/what-are-the-recent-updates-to-guideline-driven-care-in-non-advanced-systemic-mastocytosis/15627/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

CME credits: 1.00 Valid until: 20-06-2024 Claim your CME credit at https://reachmd.com/programs/cme/updates-in-the-field-of-non-advanced-systemic-mastocytosis/15626/ Non-advanced systemic mastocytosis (nonAdvSM) is poorly understood and likely often overlooked or misdiagnosed. Multiple issues complicate the accurate differential diagnosis of nonAdvSM subtypes. Recent updates for diagnostic criteria, as well as validated assessments and a greater understanding of laboratory findings for this population, are providing practitioners with additional tools for arriving at an accurate diagnosis. Although many therapeutics exist for addressing symptoms of nonAdvSM, those treatments are purely palliative. To date, no disease-modifying drugs have been FDA-approved for treating nonAdvSM. However, therapeutics that are already approved for advanced SM or other indications are being evaluated in the nonAdvSM space. These drugs, particularly KIT inhibitors, have the potential to improve patient outcomes for nonAdvSM. Healthcare providers are in a unique position to improve patient outcomes by becoming experts in diagnosing, assessing, and monitoring patients with nonAdvSM; as well as ensuring access to the latest, most effective treatments. To that end, there is a need to increase disease state awareness and close knowledge gaps around the diagnosis and management of this rare disease.

Doctors Sara and Lisa talk to talk to GP and Professor of General Practice Research Dr Carolyn Chew-Graham about the current landscape of Long COVID three years on. She spoke to us on the topic back in August 2021, but what we know and some of the treatments have moved on from then. In this talk we discuss why the patient-preferred term is Long COVID rather than Post COVID Syndrome, symptoms, how many people are living with the condition in the UK to date and some of the types of management and help that are available.  You can use these podcasts as part of your CPD - we don't do certificates but they still count :) Useful resources:  Your COVID Recovery Website: https://www.yourcovidrecovery.nhs.uk/ Interviews with Patients with Long COVID: https://healthtalk.org/Long-Covid-In-Adults/overview Postural Orthostatic Tachycardia Syndrome: https://www.potsuk.org  https://www.potsuk.org/gp_guide BMJ Article on Orthostatic Tachycardia with Infographic Mentioned (March 2023): https://www.bmj.com/content/378/bmj-2022-072117 Information on Mastocytosis and Mast Cell Activation Syndrome: https://ukmasto.org/#gsc.tab=0 https://www.potsuk.org/about-pots/associated-conditions/mcas/ Greater Manchester Long COVID Support Group: https://hsm.manchester.gov.uk/kb5/manchester/directory/service.page?id=Rn19N5XSimc UK Long COVID Support Group: https://www.longcovid.org/ Support Groups for Families with a Child with Long COVID: https://www.longcovidkids.org/ Advice for Supporting a Child with Long COVID: https://theconversation.com/supporting-a-child-with-long-covid-tips-from-parents-of-children-living-with-the-condition-195153 Research on Impact of Long COVID on Racially Minoritised Groups: https://blog.westminster.ac.uk/hicovestudy/ Research on whether existing Medications have any Impact on Long COVID ‘STIMULATE ICP': https://www.stimulate-icp.org/ LOCOMOTION Study looking at Optimising Treatments in Long COVID: https://bmjopen.bmj.com/content/12/5/e063505 Be Part of Research: What Trials are available (here for people with Long COVID): https://bepartofresearch.nihr.ac.uk/results/search-results?query=long%20covid&location= National Institute for Health and Care Research: https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-take-part-in-a-study.htm Resources around advice for Returning to Work: https://www.som.org.uk/take-planned-approach-managing-long-covid-workforce-new-som-guide  https://www.fom.ac.uk/wp-content/uploads/longCOVID_guidance_04.pdf  https://bjgp.org/content/71/712/508 NICE RCGP SIGN Guidance on Managing Patients with Long COVID (Last Updated Nov 2021): https://www.nice.org.uk/guidance/ng188 RCGP Online eLearning Module on Long COVID: https://elearning.rcgp.org.uk/course/view.php?id=492 ___ We really want to make these episodes relevant and helpful: if you have any questions or want any particular areas covered then contact us on Twitter @PCKBpodcast, or leave a comment on our really quick anonymous survey here: https://pckb.org/feedback ___ This podcast has been made with the support of GP Excellence and Wigan CCG. Given that it is recorded with Greater Manchester clinicians, the information discussed may not be applicable elsewhere and it is important to consult local guidelines before making any treatment decisions.  The information presented is the personal opinion of the healthcare professional interviewed and might not be representative to all clinicians. It is based on their interpretation of current best practice and guidelines when the episode was recorded. Guidelines can change; To the best of our knowledge the information in this episode is up to date as of it's release but it is the listeners responsibility to review the information and make sure it is still up to date when they listen. Dr Lisa Adams, Dr Sara MacDermott and their interviewees are not liable for any advice, investigations, course of treatment, diagnosis or any other information, services or products listeners might pursue as a result of listening to this podcast - it is the clinicians responsibility to appraise the information given and review local and national guidelines before making treatment decisions. Reliance on information provided in this podcast is solely at the listeners risk. The podcast is designed to be used by trained healthcare professionals for education only. We do not recommend these for patients or the general public and they are not to be used as a method of diagnosis, opinion, treatment or medical advice for the general public. Do not delay seeking medical advice based on the information contained in this podcast. If you have questions regarding your health or feel you may have a medical condition then promptly seek the opinion of a trained healthcare professional.

Do you know which you should be treating first -- the systemic mastocytosis (SM) or the associated hematological neoplasm (AHN)?    Credit available for this activity expires: 3/24/2024 Earn Credit / Learning Objectives & Disclosures: https://www.medscape.org/viewarticle/990024?ecd=bdc_podcast_libsyn_mscpedu

CME credits: 1.25 Valid until: 21-12-2023 Claim your CME credit at https://reachmd.com/programs/cme/current-guidelines-and-management-of-non-advanced-systemic-mastocytosis/14545/ Systemic mastocytosis (SM) is a rare heterogeneous disease characterized by clonal expansion and accumulation of neoplastic mast cells in one or more organs (most commonly bone marrow with or without skin involvement). Most patients with SM have non-advanced disease (indolent and smoldering subtypes) for which there are currently no FDA-approved therapies that address the underlying pathogenesis of the disease. Given its rarity, many clinicians are not aware of the unique clinical features, disease burden, or the recent updates to the World Health Organization (WHO) diagnostic and subtyping criteria for SM, resulting in long delays in diagnosis and suboptimal care in clinical practice. Taken together, these practice gaps highlight a need for evidence-based, up-to-date continuing education activities for clinicians on optimal diagnosis and management of non-advanced SM.

CME credits: 1.25 Valid until: 21-12-2023 Claim your CME credit at https://reachmd.com/programs/cme/symptoms-of-systemic-mastocytosis/14544/ Systemic mastocytosis (SM) is a rare heterogeneous disease characterized by clonal expansion and accumulation of neoplastic mast cells in one or more organs (most commonly bone marrow with or without skin involvement). Most patients with SM have non-advanced disease (indolent and smoldering subtypes) for which there are currently no FDA-approved therapies that address the underlying pathogenesis of the disease. Given its rarity, many clinicians are not aware of the unique clinical features, disease burden, or the recent updates to the World Health Organization (WHO) diagnostic and subtyping criteria for SM, resulting in long delays in diagnosis and suboptimal care in clinical practice. Taken together, these practice gaps highlight a need for evidence-based, up-to-date continuing education activities for clinicians on optimal diagnosis and management of non-advanced SM.

CME credits: 1.25 Valid until: 21-12-2023 Claim your CME credit at https://reachmd.com/programs/cme/multidisciplinary-approach-to-making-the-diagnosis-of-systemic-mastocytosis/14543/ Systemic mastocytosis (SM) is a rare heterogeneous disease characterized by clonal expansion and accumulation of neoplastic mast cells in one or more organs (most commonly bone marrow with or without skin involvement). Most patients with SM have non-advanced disease (indolent and smoldering subtypes) for which there are currently no FDA-approved therapies that address the underlying pathogenesis of the disease. Given its rarity, many clinicians are not aware of the unique clinical features, disease burden, or the recent updates to the World Health Organization (WHO) diagnostic and subtyping criteria for SM, resulting in long delays in diagnosis and suboptimal care in clinical practice. Taken together, these practice gaps highlight a need for evidence-based, up-to-date continuing education activities for clinicians on optimal diagnosis and management of non-advanced SM.

CME credits: 1.25 Valid until: 21-12-2023 Claim your CME credit at https://reachmd.com/programs/cme/targeted-therapy-for-non-advanced-systemic-mastocytosis/14546/ Systemic mastocytosis (SM) is a rare heterogeneous disease characterized by clonal expansion and accumulation of neoplastic mast cells in one or more organs (most commonly bone marrow with or without skin involvement). Most patients with SM have non-advanced disease (indolent and smoldering subtypes) for which there are currently no FDA-approved therapies that address the underlying pathogenesis of the disease. Given its rarity, many clinicians are not aware of the unique clinical features, disease burden, or the recent updates to the World Health Organization (WHO) diagnostic and subtyping criteria for SM, resulting in long delays in diagnosis and suboptimal care in clinical practice. Taken together, these practice gaps highlight a need for evidence-based, up-to-date continuing education activities for clinicians on optimal diagnosis and management of non-advanced SM.

CME credits: 1.25 Valid until: 21-12-2023 Claim your CME credit at https://reachmd.com/programs/cme/changing-the-treatment-paradigm-taking-a-targeted-approach-to-treating-non-advanced-systemic-mastocytosis/14548/ Systemic mastocytosis (SM) is a rare heterogeneous disease characterized by clonal expansion and accumulation of neoplastic mast cells in one or more organs (most commonly bone marrow with or without skin involvement). Most patients with SM have non-advanced disease (indolent and smoldering subtypes) for which there are currently no FDA-approved therapies that address the underlying pathogenesis of the disease. Given its rarity, many clinicians are not aware of the unique clinical features, disease burden, or the recent updates to the World Health Organization (WHO) diagnostic and subtyping criteria for SM, resulting in long delays in diagnosis and suboptimal care in clinical practice. Taken together, these practice gaps highlight a need for evidence-based, up-to-date continuing education activities for clinicians on optimal diagnosis and management of non-advanced SM.

CME credits: 1.25 Valid until: 21-12-2023 Claim your CME credit at https://reachmd.com/programs/cme/how-should-i-evaluate-treatment-responses-in-non-advanced-systemic-mastocytosis/14547/ Systemic mastocytosis (SM) is a rare heterogeneous disease characterized by clonal expansion and accumulation of neoplastic mast cells in one or more organs (most commonly bone marrow with or without skin involvement). Most patients with SM have non-advanced disease (indolent and smoldering subtypes) for which there are currently no FDA-approved therapies that address the underlying pathogenesis of the disease. Given its rarity, many clinicians are not aware of the unique clinical features, disease burden, or the recent updates to the World Health Organization (WHO) diagnostic and subtyping criteria for SM, resulting in long delays in diagnosis and suboptimal care in clinical practice. Taken together, these practice gaps highlight a need for evidence-based, up-to-date continuing education activities for clinicians on optimal diagnosis and management of non-advanced SM.

CME credits: 0.25 Valid until: 07-10-2023 Claim your CME credit at https://reachmd.com/programs/cme/indolent-systemic-mastocytosis-ism-treatment-options-for-ism/13995/ Indolent systemic mastocytosis is a rare disease often overlooked in the general healthcare setting. Drs. Deepti Radia and Cem Akin outline diagnostic criteria, signs and symptoms, and diagnostic tests to confirm diagnosis.

CME credits: 0.25 Valid until: 15-09-2023 Claim your CME credit at https://reachmd.com/programs/cme/indolent-systemic-mastocytosis-ism-updates-in-identification-diagnosis-and-treatment/13994/ It could take up to 7 years for a patient to be accurately diagnosed with systemic mastocytosis. Drs. Jason Gotlib and Cem Akin take us through the guidelines, diagnostic criteria, signs and symptoms, and the most important diagnostic tests for high-suspicion patients.

CME credits: 0.25 Valid until: 15-09-2023 Claim your CME credit at https://reachmd.com/programs/cme/indolent-systemic-mastocytosis-ism-tools-to-diagnose-ism/13994/ It could take up to 7 years for a patient to be accurately diagnosed with systemic mastocytosis. Drs. Jason Gotlib and Cem Akin take us through the guidelines, diagnostic criteria, signs and symptoms, and the most important diagnostic tests for high-suspicion patients.

Jason Gotlib, MD, Stanford University School of Medicine, Palo Alto, CA Recorded on July 19, 2022 Mastocytosis is a rare and complex disease. In this special episode, Dr. Jason Gotlib from the Stanford University School of Medicine in Palo Alto, CA, discusses an overview of the disease, including its subtypes, clinical presentations, and treatment related toxicities. Dr. Gotlib addresses the importance of second opinions, collaborating with multidisciplinary specialists to treat patients, unmet needs and exciting new and emerging treatments. Learn more about the future of mastocytosis by listening to this episode today!    This podcast episode is supported by Blueprint Medicines Corporation.

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In this episode, Dr Prithviraj Bose, Pharmacist Caitlin R. Rausch, and Nurse Practitioner Ilene A. Galinsky discuss incorporating KIT-targeted therapies into management of patients with advanced systemic mastocytosis. Topics include:Diagnosis and prognosis of advanced systemic mastocytosisClinical trial data on efficacy of avapritinib and midostaurinMonitoring for and managing key toxicities with avapritinib, including cognitive dysfunctionPresenters:Prithviraj Bose, MDAssociate ProfessorDivision of Cancer MedicineDepartment of LeukemiaThe University of Texas MD Anderson Cancer CenterHouston, TexasCaitlin R. Rausch, PharmDClinical Pharmacy Specialist, LeukemiaDivision of PharmacyUniversity of Texas MD Anderson Cancer CenterHouston, TexasIlene A. Galinsky, NPSenior Research Program Adult Leukemia Nurse PractitionerDepartment of LeukemiaDana-Farber Cancer Institute/Brigham and Women's HospitalBoston, Massachusetts

Alain Moussy is the Co-Founder and CEO of AB Science a clinical-stage company designing and developing novel drugs to address diseases with high unmet medical needs. Masitinib, their drug in development is being investigated in neurological diseases such as amyotrophic lateral sclerosis, Alzheimer's, and multiple sclerosis as well for severe forms of COVID-19 and as an antiviral anti-protease in ambulatory COVID-19 patients. Alain explains, "We have started two such studies in amyotrophic lateral sclerosis (ALS) disease, which is well known across the world, and another one in a rare disease called Mastocytosis, and those two studies are up and running. We have also started a phase 2 in COVID with masitinib after the University of Chicago discovered that masitinib is actually a potent antiviral against the virus, which was actually a surprise for us. Now that we have this data, we are developing masitinib for COVID as an antiviral. And you know, Karen, we need an antiviral along with the vaccine to fight this pandemic." "The development of masitinib in Covid was not anticipated because our drug was not designed to be an antiviral. It's just that the structure of the protease of the virus has a strong affinity with the structure of our compound by chance. The co-crystallizations of the protease of the virus with masitinib, which has been done by the University of Chicago, show that they match." #ABScience #COVID19 #Masitinib #AntiviralDrug #ALS #Alzheimers #MS AB-Science.com Listen to the podcast here

Alain Moussy is the Co-Founder and CEO of AB Science a clinical-stage company designing and developing novel drugs to address diseases with high unmet medical needs. Masitinib, their drug in development is being investigated in neurological diseases such as amyotrophic lateral sclerosis, Alzheimer's, and multiple sclerosis as well for severe forms of COVID-19 and as an antiviral anti-protease in ambulatory COVID-19 patients. Alain explains, "We have started two such studies in amyotrophic lateral sclerosis (ALS) disease, which is well known across the world, and another one in a rare disease called Mastocytosis, and those two studies are up and running. We have also started a phase 2 in COVID with masitinib after the University of Chicago discovered that masitinib is actually a potent antiviral against the virus, which was actually a surprise for us. Now that we have this data, we are developing masitinib for COVID as an antiviral. And you know, Karen, we need an antiviral along with the vaccine to fight this pandemic." "The development of masitinib in Covid was not anticipated because our drug was not designed to be an antiviral. It's just that the structure of the protease of the virus has a strong affinity with the structure of our compound by chance. The co-crystallizations of the protease of the virus with masitinib, which has been done by the University of Chicago, show that they match." #ABScience #COVID19 #Masitinib #AntiviralDrug #ALS #Alzheimers #MS AB-Science.com Download the transcript here

Mast Cell Activation Syndrome (MCAS) is a condition that impacts children and adults. In this episode featuring our guest, Dr Bethan Myers, Consultant Haematologist at University Hospitals, Leicester, and host Headache Specialist Dr Katy Munro discusses the impact of MCAS on people with migraine. In the last segment of the episode, Anna shares her struggle with MCAS and migraine.  The episode discusses:  MCAS and Long Covid MCAS and Ehlers Danlos MCAS and hypermobility Useful links:  https://www.mastcellaction.org/ https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/ https://tmsforacure.org/ We need your support. Donate here: https://www.justgiving.com/campaign/headsup

Mast Cell Activation Syndrome (MCAS) is a condition that impacts children and adults. In this episode featuring our guest, Dr Bethan Myers, Consultant Haematologist at University Hospitals, Leicester, and host Headache Specialist Dr Katy Munro discusses the impact of MCAS on people with migraine. In the last segment of the episode, Anna shares her struggle with MCAS and migraine.  The episode discusses:  MCAS and Long Covid MCAS and Ehlers Danlos MCAS and hypermobility Useful links:  https://www.mastcellaction.org/ https://allergyasthmanetwork.org/health-a-z/mast-cell-diseases/ https://tmsforacure.org/ We need your support. Donate here: https://www.justgiving.com/campaign/headsup

This episode is also available as a blog post: https://mdforlives.blog/2021/07/12/avapritinib-approved-for-systemic-mastocytosis/ --- Send in a voice message: https://anchor.fm/mdforlives/message

Episode 23: An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield In this episode, Dr. Jill Schofield  discusses MAST cell activation syndrome. MAST cells are used to fight off foreign invaders and are present in all areas of the body, but most in the GI tract, genitourinary tract, skin, and sinus system. When they go awry, it causes inflammatory effects. In MCAS, mast cells are inappropriately activated. MCAS can be primary or secondary (to development of autoimmune disease, exposure to mold, Lyme disease, or COVID). Symptoms often can start in very young children. There are two different consensus criteria, which are not agreed upon. Consensus one has a narrow definition and consensus 2 has a less narrow criteria. Symptoms include feeling cold or hot water being poured on your leg when it isn't, nausea, diarrhea, chest pain and tightness, anaphylaxis, heavy menstruation, pain,  heartburn, eczema, allergies, exercise induced asthma, neuropsychiatric symptoms, depression, anxiety, headaches, rage episodes, flushing, itching, rashes, hives, environmental allergies, ovarian cysts, cysts in the body, fibroids, lypomas, polyps, wound healing issues, abdominal pain, GI symptoms, diarrhea, constipation, neausea, vomiting, skin issues, POTS, difficulty getting a deep breath, insomnia, hypersomnia, and IBS.   Triggers include extremes in temperature, changes in temperature, stress(physical or emotional), change in altitude or barometric pressure, chemicals in the environment, high histamines in food, physical pressure on the body, chemicals in food, mold, leftovers, chemicals in plastic, meats that use tryptase, elastace, and riper foods. People with MCAS tend to be very sensitive to numerous medications. Different triggers trigger different types of symptoms. Triggers seem to be additive to cause worse symptoms. Keep a food diary to see what your triggers are. MCAS causes multiple symptoms in multiple organs that don't seem to make a lot of sense. MCAS symptoms can vary in severity and symptoms across people and within an individual. MCAS reactions are not allergies. This is an important distinction.    If you have a physician who doesn't understand MCAS, tailor what you say to the knowledge base of that physician and be careful how you phrase things, in an effort to gain their understanding. To get a diagnosis, seek out an allergist of a gastroenterologist. The tests for MCAS are very poor and there are lots of ways it could go wrong, leading to lack of diagnosis. They are better for diagnosis mastocytosis. They tests are very insensitive and rarely do they come back positive. Serum prostaglandin d2, plasma histamine, chromogranin a are the best tests to run to yield a positive result. A lot of these tests are only available in the US and the UK. MAST cell count on endoscopy slides are also helpful. Treatment includes Histamine 1 and 2 blockers, avoiding triggers, low histamine diet, chromalin, and antihistamines. Treatments for MCAS include recognizing a flare and treating it as soon as possible. Make sure you have a good POTS doctor and allergist. Dr. Schofield also discussed and explained small fiber neuropathy, including what it is, how to assess it, and the problems with the current diagnostic system. MCAS is one cause of small fiber neuropathy. Treatment of MCAS can also potentially help minimize POTS symptoms. POTS and MCAS have a huge overlap in symptoms, with a few exceptions. However, they may have different triggers. Treatment differs between the two conditions and if you figure out which is causing what symptoms, you can tailor the treatment for the flare of that specific condition. Response to treatment can help inform what is caused by POTS vs MCAS vs EDS. There seems to be a genetic link in MCAS, but this is not the case in everyone. To educate yourself, get on MCAS forums and read a book about MCAS. Center for Multisystem Disease Research Paper Global Consensus 2 Criteria Never Bet Against Occam MCAS United My Crazy Life Mast Attack Blog   Links: Website Facebook Instagram Email Twitter     Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple  Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple

Listen to a soundcast of the June 16, 2021 FDA approval of Ayvakit (avapritinib) for adult patients with advanced systemic mastocytosis , including patients with aggressive systemic mastocytosis, systemic mastocytosis with an associated hematological neoplasm, and mast cell leukemia

This week the FDA approved a regenerative skin tissue therapy and a treatment for advanced mastocytosis, while Novavax's vaccine for COVID and a novel treatment for MDD show promise. Also the FDA issue warning concerning hand sanitizers.

Dr Frank Siebenhaar brings us up to date on the differences between mastocytosis, urticaria and mast cell activation syndrome (MCAS). He also introduces CSUplus, an ongoing UCARE project that aims to shed light on the extracutaneous symptoms of chronic spontaneous urticaria.

Follow Arend on Instagram: @arendrichard   Follow on Twitter: @arendlovesyou   Purchase his new book “Being Found” at https://beingfoundbook.com/ OR on Amazon at https://www.amazon.com/Being-Found-Arend-Richard/dp/B08N1M58VG   Check out TheWeedTube, a safe platform for cannabis creators co-founded by Arend:  https://www.theweedtube.com/   Listen to his Podcast “Fun2Speculate” on all podcast platforms!   Download TheWeedTube app on your smartphone!   1:31 According to rarediseases.org, “Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs”.   3:22 The disease is very rare- it affects fewer than 200,000 people in the United States at any given time.   24:00 Arend mentions his new series on TheWeedTube called “Stoner Thoughts”, out now!  Check out his channel: https://www.theweedtube.com/user/ArendRichard

Topics include Oregon beauty.; People.; Left vs. Right.; Night shift.; Appropriate failure rates.; Reconciliation.; Martin Luther King Jr.; First level principles.; American history.; Mastocytosis.; Thank you. Recorded 1-18-21

Systemic mastocytosis (SM) is a rare hematological neoplasm. Advanced systemic mastocytosis can be sub-classified into either aggressive SM, SM with... The post Systemic mastocytosis: current landscape, novel agents and COVID-19 appeared first on VJHemOnc.

Systemic mastocytosis (SM) is a rare hematological neoplasm. Advanced systemic mastocytosis can be sub-classified into either aggressive SM, SM with... The post Systemic mastocytosis: current landscape, novel agents and COVID-19 appeared first on VJHemOnc.

Born a healthy and happy baby, the lives of Mom Nicol and her hubby changed when their son was diagnosed with Cutaneous Mastocytosis when he was just 12 weeks old. Mastocytosis is a condition that occurs when mast cells accumulate in the skin and/or internal organs such as the liver, spleen, bone marrow, and small intestines. They share their story to support other parents. 28 February is Disease Awareness Day to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases in their families.

Elana Afrika-Bredenkamp — Born a healthy and happy baby, the lives of Mom Nicol and her hubby changed when their son was diagnosed with Cutaneous Mastocytosis when he was just 12 weeks old. Mastocytosis is a condition that occurs when mast cells accumulate in the skin and/or internal organs such as the liver, spleen, bone marrow, and small intestines. They share their story to support other parents. 28 February is Disease Awareness Day to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases in their families.

In this episode we discuss Mast cell activation disorder (MCAD) with Tara Notrica from New York.  MCAD is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.

Beth O’Hara, Functional Naturopath, joins us to discuss Mast Cell Activation Syndrome in depth today. We learn the difference between Histamine Intolerance, MCAS, and Mastocytosis. Plus why treatment can be so complex and how to find the root cause. Beth discusses the connection between MCAS and other chronic illness diagnoses (like EDS, POTS, fibromyalgia, etc). We finish by reviewing Derek and Victoria’s Organic Acids Test results and learn how the OAT test can help patients in their healing journey. Beth has founded her own Functional Naturopathy Practice- Mast Cell 360- designed to be the dream practice she wishes she had when she was sick. She looks at patients as a whole, including the mental health aspect. If you are listening to this when it comes out (July 17th), Beth is offering a great discount to all our listeners for the week from July 17th-July 24th 2019. You can schedule a case review with OAT test included for $50 off at www.mastcell360.com/podcastLinks Beth mentioned in the episode:Free Report: https://mastcell360.com/freereport/Histamine Food List: https://mastcell360.com/mcas-resources/Connect with Beth:Website: www.mastcell360.comFacebook: https://www.facebook.com/MastCell360 Get in touch by emailing us at beyondyourdiagnosis@gmail.comor messaging us on Instagram @beyondyourdiagnosis. Send us any questions, comments, or episode topics you’d like us to address. You can find Victoria on Instagram @lemonsnlyme @theinfluencehealth and Derek at @chronicloveclub*Disclaimer: this podcast is not meant to replace medical advice. We are simply sharing our experiences and advice. Also, adult language may be used.

Bethany is disabled due to various chronic illnesses, which include; Ehlers Danlos Syndrome, Postural Orthodontic Tachycardia Syndrome, Mast Cell Activation Syndrome, and Mastocytosis. Bethany's Links https://www.instagram.com/rebellious_story/ Our Pages www.facebook.com/1aweekchallenge www.instagram.com/_1aweek www.1aweekchallenge@gmail.com *Trigger Warning* If this episode in anyway made you feel like self harming, or you need in general, please contact one of the numbers provided below. National Suicide Prevention Lifeline: 1-800-273-8255 Depression and Bipolar Support Alliance (DBSA): 1-800-826-3632 SAMHSA Treatment Locator: 800-662-4357

Sophie Mullins is an Edinburgh-based and plant-powered software engineer and runner. She was good enough to sit down with me just a few days after the 95-mile West Highland Way Race in June, with an impressive array of bumps and bruises, and tell me the story of some pretty sizeable life challenges she’s been through over the past few years. Sophie has a rare disease called Mastocytosis, where the body’s mast cells (a kind of white blood cell) become too active, increasing the risk of life-threatening allergic reactions through anaphylaxis. Sophie talks about her journey from diagnosis and being told she couldn’t run again to treatment and discovering how she could be active whilst managing the disease – a pretty unprecedented move in the community of sufferers. Since then, Sophie has become Scottish champion at the 100k distance – on punishing road no less – run sub 3 hour marathons and won 5km races outright. But more importantly to Sophie, she’s been able to just keep active and moving in the outdoors and it was so interesting getting an insight into the strength of mind that helped her prove doctors wrong. Enjoy this conversation! It’s about dealing with the unexpected roadblocks life throws at us, self-belief and the huge role of outdoor activity.

Mastocytosis

Mastocytosis

Kera has three red-headed children, each with their own set of special needs. Julianna has autism, Tourettes, anxiety, sensory processing disorder, stereotypic movement disorder, and OCD. Blake has mastocytosis. Nathan was born with a cleft palate. Each mile of Kera's parenting journey has taught her something she never expected to have to learn. When Julianna decided she wanted to join a softball team, Kera and her husband were nervous, but encouraged their daughter. In the end, they all had an experience they weren't expecting.   http://www.bringingupbetty.com/5

The best discoveries are often found completely by accident. It seems that may be happening again for Autism. Dr Theoharis Theoharides (Dr. Theo) from Tufts University, has come across a breakthrough in Autism. Several years ago when Dr Theoharides was researching a completely different disease called Mastocytosis, he noticed an extremely high co- occurrence of Autism in these people. Through a simple survey it was found that 10% of people with Mastocytosis also had an ASD diagnosis. That raised a big red flag to Dr. Theo since having that big of an increase of having a disease within a certain population ( 1 in 10 for Mastocytosys) compared to the regular population (1 in a 100) points to a direct connection. This compelled Dr. Theo to do testing of autistic children and lead to the discovery that autistic children had activated Mast cells. Activated mast cells cause many of the same symptoms found in autistic children. Listen as we discuss how mast cells can affect behavior, language, stress and neurological symptoms. 

This podcast discusses the current state of knowledge regarding allogeneic transplantation as a treatment modality for advanced systemic mastocytosis.

Have you wondered about the role of histamine in chronic illness? Do you have, or know anyone who suffers from, Mast Cell Activation Disorder, Mast Cell Disease or Mastocytosis? Then, this week's show is for you! On Monday, 7/28/14 at 8PM Eastern, Dr. Jess Armine will discuss Mastocytosis, Mast Cell Disease, Histamine and its relationship to Epigenetics as well as the current treatment protocols. Also, There will be discussion on alternative medicine options and ....maybe...a different way of looking at these disorders. (Maybe they have the same base cause(s)) As always, there will be time for Q&A! Look forward to seeing you there!

Wed, 09 May 2012 14:32:40 GMT http://saveyourskin.ch/podcast/EN/3.1.9.Urticaria_pigmentosa.mp4 Prof. Dr. Dr. h. c. Günter Burg, MD Zürich & Prof. Dr. Walter Burgdorf, MD 2013-03-10T14:32:37Z Prof. Dr. Dr. h. c. Günter Burg, MD Zürich & Prof. Dr. Walter Burgdorf, MD no Mac

Diagnosis of systemic mastocytosis (SM) is mainly based on the morphological demonstration of compact mast cell infiltrates in various tissue sites. In almost all patients such infiltrates are detected in the bone marrow. Reliable immunohistochemical markers for the diagnosis and grading of SM have been established, but various differential diagnoses including myeloproliferative neoplasms, basophilic and eosinophilic leukemias may be very difficult to delineate. Even more challenging is the recognition of hematological neoplasms with signs of mast cell differentiation but not fulfilling diagnostic criteria for SM, especially the rare myelomastocytic leukemia. It is also important to separate the reactive state of mast cell hyperplasia from indolent variants of SM, especially those with a very low degree of bone marrow infiltration and absence of compact mast cell infiltrates. When the lymphocytic component of the SM infiltrate is very prominent, SM may be confused with an indolent lymphoma, especially lymphoplasmacytic lymphoma which almost always shows a marked reactive increase in mast cells. In aggressive and leukemic variants of SM, mast cells may be very atypical and devoid of metachromatic granules. This hypogranulation can be regarded as cellular atypia and may lead to the misdiagnosis aspect of monocytic leukemia or histiocytic neoplasm. Regarding immunohistochemical anomalies, mast cells in aggressive and leukemic SM have been found to express CD30 (Ki1-antigen). Thus, anaplastic large cell lymphoma or Hodgkin's disease may first be considered rather than SM. There is increasing evidence that most patients with long-standing adult-type urticaria pigmentosalike skin lesions have in fact indolent SM. Therefore, such skin lesions are an important clue to the correct diagnosis in these patients. However, in aggressive or leukemic SM skin lesions are usually absent and then the correct diagnosis relies on an appropriate investigation of bone marrow biopsy specimens using both SM-related immunohistochemical markers (tryptase, KIT, CD25, CD30) but also markers excluding potential differential diagnoses. Investigation for presence of the activating KIT point mutation D816V is very helpful to establish a correct diagnosis of SM in all the difficult cases exhibiting a low degree of bone marrow infiltration or puzzling morphological findings. Copyright (C) 2010 S. Karger AG, Basel

We report on a 33-year-old female patient with indolent systemic mastocytosis and urticaria pigmentosa who died of an anaphylactic reaction after a yellow jacket sting. As she had no history of previous anaphylactic sting reaction, there was no testing performed in order to detect hymenoptera venom sensitization. But even if a sensitization had been diagnosed, no venom immunotherapy (VIT) would have been recommended. It is almost certain that VIT would have saved her life and it is most likely that VIT is indicated in some patients with mastocytosis with no history of anaphylactic sting reaction. However, no criteria have been established in order to allow a selection of mastocytosis patients eligible for such a `prophylactic' VIT. Copyright (C) 2008 S. Karger AG, Basel.

Systemic mastocytoses represent neoplastic proliferations of mast cells. In about 20% of cases systemic mastocytoses are accompanied by clonal haematopoietic non-mast cell-lineage disorders, most commonly myeloid neoplasms. A case of systemic mastocytosis carrying the characteristic mutation at codon 816 (D816V) in the KIT gene of mast cells, with two concurrent accompanying clonal haematopoietic non-mast cell-lineage disorders, chronic myeloproliferative disease, unclassifiable and precursor B lymphoblastic leukaemia is documented. Both accompanying clonal haematopoietic non-mast cell-lineage disorders carried the wild-type KIT gene, but had a novel t(13;13)(q12;q22) involving the FLT3 locus at 13q12. The chronic myeloproliferative disease, unclassifiable and the precursor B lymphoblastic leukaemia were cured by syngenous stem cell transplantation, but the systemic mastocytosis persisted for more than 10 years. The additional impact of molecular techniques on the correct diagnosis in haematological malignancies is highlighted, and evidence is provided that, apart from internal tandem duplications and mutations, FLT3 can be activated by translocations.