POPULARITY
18 episodes with Mastocytosis
3 episodes with Mastocytosis
2 episodes with Mastocytosis
2 episodes with Mastocytosis
2 episodes with Mastocytosis
2 episodes with Mastocytosis
2 episodes with Mastocytosis
2 episodes with Mastocytosis
2 episodes with Mastocytosis
Living with Mast Cell Activation Syndrome (MCAS) requires constant awareness and preparation—but what happens when you hit the road or board a plane? We're joined by content creator and patient advocate, Jenna Gestetner, who's sharing her top strategies and favorite tips for traveling safely and confidently with MCAS. Resources to keep you in the know:Mast Cell Disease SocietyFAACT's Allergy SummitJennaXHealthInstagram: JennaXHealthTikTok: JennaXHealthYouTube: JennXHealthLinkedIn: Jenna GestetnerYou 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: ARS PharmaThanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!
Stay ahead in Systemic Mastocytosis (SM) treatment! This interview, featuring Dr. Mariana Castells, explores the latest advancements in patient-centered care, including new drug approvals, multidisciplinary approaches, and crucial diagnostic updates. Learn how to shorten diagnosis times and improve long-term patient quality of life. Stay tuned after the interview to hear Module 1 of the podcast series, "Mastering Systemic Mastocytosis: From Early Detection to Tailored Treatment Strategies" Don't forget to claim your credit after the episode! Click on the link to claim your credit for module 1: bit.ly/3Y3ivHM Click here to continue listening to Module 2 of this podcast series: bit.ly/43VoFNP
Stay ahead in Systemic Mastocytosis (SM) treatment! This interview, featuring Dr. Mariana Castells, explores the latest advancements in patient-centered care, including new drug approvals, multidisciplinary approaches, and crucial diagnostic updates. Learn how to shorten diagnosis times and improve long-term patient quality of life. Stay tuned after the interview to hear Module 2 of the podcast series, "Mastering Systemic Mastocytosis: From Early Detection to Tailored Treatment Strategies" Don't forget to claim your credit after the episode! Click on the link to claim your credit for module 2: bit.ly/43VoFNP
KeywordsAggressive Systemic Mastocytosis, chronic illness, advocacy, mental health, writing, self-care, body image, healthcare activism, rare diseases, educationSummaryIn this conversation, Rachel Largent Phillips shares her journey with aggressive systemic mastocytosis, a rare disorder that significantly impacts her daily life. She discusses the challenges of living with a chronic illness, including navigating the healthcare system, advocating for herself and others, and the emotional toll of writing her book, 'Life Beyond the Flare.' Rachel emphasizes the importance of self-care, mental health, and authenticity in the face of societal pressures and the complexities of living with a rare disease. She also highlights the political nature of healthcare and the need for continued advocacy for those with chronic illnesses.TakeawaysRachel was born with aggressive systemic mastocytosis, diagnosed in her 30s.It took 12 years for her to receive a proper diagnosis.Daily life is unpredictable, requiring constant vigilance and preparedness.Advocacy is crucial; Rachel has lobbied for healthcare reforms.Writing her book was a way to educate others about her rare disease.Self-care and giving oneself grace are essential for managing chronic illness.Rest can take many forms, including mental and emotional breaks.Navigating relationships while managing a chronic illness can be challenging.Societal beauty standards can add pressure to those with chronic illnesses.Mental health is as important as physical health in chronic illness management.Sound bites"I was born with it.""I have lots of EpiPens.""It's okay to have bad days."Chapters00:00 Understanding Aggressive Systemic Mastocytosis03:31 Navigating Daily Life with a Rare Disorder07:47 Advocacy and Activism in Healthcare10:51 The Emotional Journey of Writing a Book13:48 Finding Grace in Chronic Illness16:01 Rest and Self-Care Strategies18:27 Managing Allergies and Anaphylaxis21:33 Dating and Relationships with Chronic Illness24:45 Societal Pressures and Body Image29:11 The Importance of Mental Health34:07 The Power of Authenticity37:34 Navigating the Medical System43:45 The Reality of Living with a Rare Disease49:56 Pursuing Education Amidst Health Challenges54:06 The Political Nature of Healthcare Hosted on Acast. See acast.com/privacy for more information.
Indolent Systemic Mastocytosis (ISM) is a rare but often underrecognized clonal mast cell disorder. From random hives to gut pain and brain fog, ISM can feel like a medical mystery. We continue our review of “Management of indolent mastocytosis and mast cell activation syndrome - A clinical yardstick,” published in June 2025 in The Annals of Allergy, Asthma & Immunology. This is Part 2 of our discussion, with a focus on indolent systemic mastocytosis. We look at what causes it, how it's diagnosed, and how to manage symptoms and improve quality of life. In this episode, we break down this complex mast cell disease and how doctors use baseline serum tryptase, KIT D816V testing, and HaT screening to find answers. Plus, we explain how treatments like antihistamines, mast cell stabilizers, and avapritinib can help people live better with ISM.
We are back in our fifth season on the Gut Doctor podcast and are going to launch this year with systemic mastocytosis. My guest today is Dr. Matthew Hamilton who is the lead gastroenterologist at Brigham's Mastocytosis Center and assistant professor of medicine at Harvard Medical School. The educational material for today's episode is made possible through a grant from Blueprint Medicines.
“You will think it is mastocytosis much more often than you'll actually diagnose mastocytosis.” — Dr. Matthieu PicardMastocytosis is rare, complex, and often confused with other mast cell disorders. To help clinicians cut through the confusion, Dr. Mariam Hanna welcomes Dr. Mathieu Picard, allergist and clinical immunologist, who has built a dedicated practice caring for patients with mast cell diseases. Together, they explore what physicians need to know about diagnosis, monitoring, and management.On this episode:Adults: Around 80% of adults with skin lesions have systemic mastocytosis, and the disease typically persists.Children: Pediatric cases are almost always cutaneous and often resolve by puberty.When to order a tryptase — and why a normal result doesn't rule out systemic diseaseThe role of KIT D816V mutation testing and why biopsy technique mattersKey risks to monitor in indolent systemic mastocytosis: anaphylaxis, osteoporosis, and rare progression to advanced diseasePractical tips for patient care, including venom immunotherapy considerations, osteoporosis screening, and symptom control strategiesMastocytosis may be rare, but it doesn't take uncommon skill to spot — just the right tools, a sharp eye, and maybe a tongue depressor scratched five times.Visit the Canadian Society of Allergy and Clinical ImmunologyFind an allergist using our helpful toolFind Dr. Hanna on X, previously Twitter, @PedsAllergyDoc or CSACI @CSACI_caThe Allergist is produced for CSACI by PodCraft Productions
Thanai Pongdee, MD - From Diagnosis to Treatment Escalation: Improving Outcomes Across the Patient Journey in Indolent Systemic Mastocytosis
Thanai Pongdee, MD - From Diagnosis to Treatment Escalation: Improving Outcomes Across the Patient Journey in Indolent Systemic Mastocytosis
Thanai Pongdee, MD - From Diagnosis to Treatment Escalation: Improving Outcomes Across the Patient Journey in Indolent Systemic Mastocytosis
Thanai Pongdee, MD - From Diagnosis to Treatment Escalation: Improving Outcomes Across the Patient Journey in Indolent Systemic Mastocytosis
Thanai Pongdee, MD - From Diagnosis to Treatment Escalation: Improving Outcomes Across the Patient Journey in Indolent Systemic Mastocytosis
Thanai Pongdee, MD - From Diagnosis to Treatment Escalation: Improving Outcomes Across the Patient Journey in Indolent Systemic Mastocytosis
In this “Connect The Dots” episode, Chris & Filly dive into a listener's case - a lady who is struggling with debilitating health anxiety, and over-reactive body and mind, and mastocytosis (hyperactive immune system), post health scares, medical trauma and an abusive relationship. Chris & Filly cover: The listener's case history - symptomatology, when it all started, what she's tried so far Body systems that would be worth lab testing, to identify physical imbalances connected with health anxiety and mastocystosis The limbic system trauma loop: why the brain-body system becomes over-reactive Learning that pain is a loving message, and that the body is fighting for you not against you Identity tied up in illness, and how to start rewiring a lack of trust with the body Show Note Links: If you're keen to get your case workshopped (anonymously - you won't personally be on the episode) for free, fill in this application form. Book in for a Connect The Dots Initial Consult Join the Ending Body Burnout Method waitlist - doors open in Sept! Take the Ending Body Burnout Assessment here Disclaimer: This Ending Body Burnout Show podcast and any information, advice, opinions or statements within it do not constitute medical, health care or other professional advice, and are provided for general information purposes only. All care is taken in the preparation of the information in this Podcast. Chris & Filly Functional Medicine does not make any representations or give any warranties about its accuracy, reliability, completeness or suitability for any particular purpose. This Podcast and any information, advice, opinions or statements within it are not to be used as a substitute for professional medical, psychology, psychiatric or other mental health care or natural medicine health care. Chris & Filly Functional Medicine recommends you seek the advice of your doctor or other qualified health providers with any questions you may have regarding a medical condition. Inform your doctor of any changes you may make to your lifestyle and discuss these with your doctor. Do not disregard medical advice or delay visiting a medical professional because of something you hear in this Podcast. To the extent permissible by law Chris & Filly Functional Medicine and the Ending Body Burnout Show Podcast will not be liable for any expenses, losses, damages (including indirect or consequential damages) or costs which might be incurred as a result of the information being inaccurate or incomplete in any way and for any reason. No part of this Podcast can be reproduced, redistributed, published, copied or duplicated in any form without the prior permission of Chris & Filly Functional Medicine.
In this “Connect The Dots” episode, Chris & Filly dive into a listener's case - a lady who is struggling with debilitating health anxiety, and over-reactive body and mind, and mastocytosis (hyperactive immune system), post health scares, medical trauma and an abusive relationship. Chris & Filly cover: The listener's case history - symptomatology, when it all started, what she's tried so far Body systems that would be worth lab testing, to identify physical imbalances connected with health anxiety and mastocystosis The limbic system trauma loop: why the brain-body system becomes over-reactive Learning that pain is a loving message, and that the body is fighting for you not against you Identity tied up in illness, and how to start rewiring a lack of trust with the body Show Note Links: If you're keen to get your case workshopped (anonymously - you won't personally be on the episode) for free, fill in this application form. Book in for a Connect The Dots Initial Consult Join the Ending Body Burnout Method waitlist - doors open in Sept! Take the Ending Body Burnout Assessment here Disclaimer: This Ending Body Burnout Show podcast and any information, advice, opinions or statements within it do not constitute medical, health care or other professional advice, and are provided for general information purposes only. All care is taken in the preparation of the information in this Podcast. Chris & Filly Functional Medicine does not make any representations or give any warranties about its accuracy, reliability, completeness or suitability for any particular purpose. This Podcast and any information, advice, opinions or statements within it are not to be used as a substitute for professional medical, psychology, psychiatric or other mental health care or natural medicine health care. Chris & Filly Functional Medicine recommends you seek the advice of your doctor or other qualified health providers with any questions you may have regarding a medical condition. Inform your doctor of any changes you may make to your lifestyle and discuss these with your doctor. Do not disregard medical advice or delay visiting a medical professional because of something you hear in this Podcast. To the extent permissible by law Chris & Filly Functional Medicine and the Ending Body Burnout Show Podcast will not be liable for any expenses, losses, damages (including indirect or consequential damages) or costs which might be incurred as a result of the information being inaccurate or incomplete in any way and for any reason. No part of this Podcast can be reproduced, redistributed, published, copied or duplicated in any form without the prior permission of Chris & Filly Functional Medicine.
Warner Carr, MD, Allergist and Immunologist at the Allergy and Asthma Associates of Southern California, discusses the mastocytosis control test and its implications for physicians.
What happens when you target the root cause of indolent systemic mastocytosis? In this episode of The Itch Review, we unpack key findings from the article “Avapritinib versus Placebo in Indolent Systemic Mastocytosis,” published on May 23, 2023, in NEJM Evidence. Indolent Systemic Mastocytosis (ISM) is a rare chronic disease with life-altering symptoms. Until recently, treatment options were limited. We break down new data from Part 2 of the PIONEER study, which evaluated Avapritinib, a targeted therapy designed to inhibit the KIT D816V mutation that drives ISM. Dr. Gupta and Dr. Blaiss explain how Avapritinib works, how the study was designed, and what outcomes were measured, including the Total Symptom Score (TSS). Most importantly, we explore what this treatment could mean for patients with moderate to severe ISM. INFOGRAPHIC What we cover in our episode about avapritinib versus placebo: Understanding ISM: How the KIT D816V mutation causes overproduction and overactivation of mast cells. Why current treatment falls short: The limitations of best supportive care and why many patients remain symptomatic despite multiple medications. How Avapritinib works: A tyrosine kinase inhibitor that targets the KIT mutation directly, aiming to reduce mast cell activation at its source. Inside the PIONEER trial: Study design, eligibility criteria, and how outcomes like Total Symptom Score (TSS) and serum tryptase were measured. What the data showed: Improvements in symptoms, lab markers, and quality of life and what this could mean for long-term ISM care. The Itch Review, hosted by Dr. Gupta, Kortney, and Dr. Blaiss, explores allergy and immunology studies, breaking down complex research in conversations accessible to clinicians, patients, and caregivers. Each episode provides key insights from journal articles and includes a one-page infographic in the show notes for easy reference. Made in partnership with The Allergy & Asthma Network. Thanks to Blueprint Medicines for sponsoring today's episode. This podcast is for informational purposes only and does not substitute professional medical advice. Always consult with your healthcare provider for any medical concerns.
Welcome back to our weekend Cabral HouseCall shows! This is where we answer our community's wellness, weight loss, and anti-aging questions to help people get back on track! Check out today's questions: Elizabeth: Hi Dr Cabral! Thank you for your informative podcast. I searched in past episodes & didn't find the answer to my question so I thought I'd write in. I'm a 49 year old woman & had bloodwork done for the first time a little over a year ago. Everything looked good except my ferritin was low at 9. For the next 12 months I took iron supplements 2-3 times a week & started eating more iron rich foods including red meat & beef liver pills. When ferritin was tested again it was only up to an 11. My PCP is now recommending I get an iron infusion. Are these safe? What might be the root cause of my low ferritin? I'm still menstruating but have never been heavy. I eat a balanced diet including meat & always have. I exercise 4-5x/ week. Could this just be genetic? Should I be concerned? Thx, Elizabeth Carrieann: Hi Dr Cabral! I love listening to your podcasts. I have a rare disease called Mastocytosis. Do you have any recommendations for natural supplements that might help. I am currently taking vitamin C and Quercitin and it they do help. I would love to improve my gut but I am a little confused on how to go about doing that when I need to keep histamines low and all the things like probiotics, kimchi, bone broth are all high histamine. Thank you for your help!! Darren: Good day Dr. Cabral. I recently got diagnosed with folliculitis and eczema by a dermatologist who stated it was spurred by my skin reacting to my many sauna sessions and regular dry brushing. Unfortunate, cause I enjoy both. I abhored the idea, but the doctor recommended doxycycline antibiotics and mupirocin topical cream which did stem the constant itching, redness, flaking. I've no noticeable side effects from medication. What do you suggest I use post medication to ensure healthy gut and it reoccurring? I was thinking maybe the clean gut probiotic or daily detox. Keep up good work. Darren: Good day, Dr Cabral. It's me again. I asked this months ago, but never got a response. Maybe question got lost or your team pulled it given it can be perceived as controversial. I appreciate your Mindset & Motivational Monday shows and all the teachings from Dispenza etc about not stressing but focusing and living in the moment. However, how does one adhere to those practices if they were living in say a conflict zone where things are beyond their control like Congo, Palestine, Sudan? Where food isn't guaranteed but constant attacks are? I get if you choose not to answer on air. Keep up good work. Sheena: Hi Dr. C! Hope you are well. After doing a Food Sensitivity test, my results showed I'm allergic to cows milk dairy. Which, I already knew for years because every time I eat dairy, like clockwork, 2-3 days later, I'd break out really bad. And even though it only takes 2-3 days to happens, it takes me at least 4+ weeks to start to clear up. My question is, would it help if I were to take a Lactaid or a dairy intolerance pill? It seems that most of those pills help with gas and bloating, which I don't get. I just get really bad acne. But was hoping that I could take this before eating a meal that I'm not 100% sure about to prevent break outs. If not Lactaid, is there a pill you could recommend that could help? Thank you so much for answering my question and for being my health GURU! :) Thank you for tuning into today's Cabral HouseCall and be sure to check back tomorrow where we answer more of our community's questions! - - - Show Notes and Resources: StephenCabral.com/3452 - - - Get a FREE Copy of Dr. Cabral's Book: The Rain Barrel Effect - - - Join the Community & Get Your Questions Answered: CabralSupportGroup.com - - - Dr. Cabral's Most Popular At-Home Lab Tests: > Complete Minerals & Metals Test (Test for mineral imbalances & heavy metal toxicity) - - - > Complete Candida, Metabolic & Vitamins Test (Test for 75 biomarkers including yeast & bacterial gut overgrowth, as well as vitamin levels) - - - > Complete Stress, Mood & Metabolism Test (Discover your complete thyroid, adrenal, hormone, vitamin D & insulin levels) - - - > Complete Food Sensitivity Test (Find out your hidden food sensitivities) - - - > Complete Omega-3 & Inflammation Test (Discover your levels of inflammation related to your omega-6 to omega-3 levels) - - - Get Your Question Answered On An Upcoming HouseCall: StephenCabral.com/askcabral - - - Would You Take 30 Seconds To Rate & Review The Cabral Concept? The best way to help me spread our mission of true natural health is to pass on the good word, and I read and appreciate every review!
Histamine intolerance is typically mild, but Mastocytosis is the most severe form of mast cell disorder—often taking nearly a decade to diagnose. Symptoms can affect multiple organs, from rashes and GI issues to life-threatening anaphylaxis, and standard treatments like low-histamine diets and antihistamines often fail.Many doctors aren't familiar with testing or treatment options for mast cell issues like Mastocytosis and MCAS.Today, I'm joined by Dr. Mariana Castells, a leading expert in allergy and immunology at Brigham and Women's Hospital. She directs the renowned Mastocytosis Center and the Drug Hypersensitivity and Desensitization Center.Even if you have histamine intolerance or MCAS, this episode offers key insights on histamine, testing, and finding real relief—because no one should suffer needlessly.⭐️Mentioned in This Episode:- Connect with Dr. Castells at https://bit.ly/3ItFhU2 - Histamine Overload Masterclass
Do patients and their healthcare teams view the impact of indolent systemic mastocytosis on quality of life in the same way? In this episode of The Itch Review, we unpack key findings from a May 4, 2025, descriptive study from The Journal of the Advanced Practitioner in Oncology, “Patient and Advanced Practitioner Perspectives on Symptom Burden and Symptom Management in Indolent Systemic Mastocytosis.” Is there a disconnect between what patients feel and what providers think when it comes to indolent systemic mastocytosis (ISM)? A new study suggests yes, revealing a mismatch between how patients and advanced practitioners (APs) perceive disease control and what that means for care. This episode dives into whether research like this could help bridge the gap between patient experience and clinical perspective. What we cover in our episode about the indolent systemic mastocytosis: Understanding ISM: What makes indolent systemic mastocytosis a unique multisystem condition? Symptom burden explained: Frequency, severity, duration, distress, and functional interference. Patient vs practitioner views: Understanding the most impactful symptoms differs from patient to AP. Practical tools: The Indolent Systemic Mastocytosis-Symptom Assessment Form (ISM-SAF) is a validated instrument that can be used to determine symptoms and severity. Barriers and solutions: Why tracking symptoms is hard and how clinics can improve coordination. AP-focused Toolkit: Resources to help nurse practitioners, PAs, and pharmacists provide patient-centered ISM care. GET THE INFOGRAPHIC HERE *** The Itch Review, hosted by Dr. Gupta, Kortney, and Dr. Blaiss, explores the latest allergy and immunology studies, breaking down complex research in conversations accessible to clinicians, patients, and caregivers. Each episode provides key insights from journal articles and includes a one-page infographic in the show notes for easy reference. *** This podcast is made in partnership with The Allergy & Asthma Network. Thanks to Blueprint Medicines for sponsoring today's episode. This podcast is for informational purposes only and does not substitute professional medical advice. Always consult with your healthcare provider for any medical concerns.
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/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.
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/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
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: 0.25 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.=
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.=
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!)
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
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