We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of dysautonomia/POTS, MCAS and hypermobility spectrum disorders. We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is going so far and how we can all help support the film. This is a crossover episode with Bendy Bodies with Hypermobility MD, Dr. Linda Bluestein. You can learn more about the documentary at MCASfund.org.
Chapters
00:00 Introduction
00:37 Creating Awareness and Increasing Treatment Options
03:09 The Birth of the Documentary Project
05:20 Filming in New York
07:19 Filming in St. Louis
10:32 The Motivation to Work with Complex Patients
15:49 The Journey of Recognizing MCAS
17:34 The Impact of MCAS Treatment
21:00 Personal Experiences and Incorporating MCAS Treatment
22:42 The Need for an Educational Library
25:29 The Challenge of Condensing Information
26:21 Describing MCAS in Sound Bites
31:10 The Importance of Raising Awareness
34:42 Growth and Development Abnormalities in MCAS
40:03 Main Points about Hypermobility Syndromes and Dysautonomia
44:48 Partnership with LDN Research Trust
51:47 Final Words and Call for Support
54:26 Recognition and Treatment of Unrecognized Patients
55:44 Importance of Learning and Trying
56:13 Gratitude for Dedicated Doctors
56:47 Closing Remarks and Resources
You can learn more about the physicians in this episode at:
https://aimcenterpm.com/ for Dr. Tania Dempsey and Dr. Lawrence Afrin
https://www.gidoctor.net/leonard-weinstock-md for Dr. Leonard Weinstock
https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md for Dr. Laurence Kinsella
https://www.hypermobilitymd.com/ for Dr. Linda Bluestein
You can read the transcript for this episode here: http://tinyurl.com/potscast186
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.
E206:Brianne Dressen on science-based support for COVID-19 vaccine injured
Your vote can raise awareness and funds - with (the very strong) Dr. Tania Dempsey
E205: Dr. Julie Maamari on perioperative considerations for complex patients
E204: Maddie can walk again! A POTS Diary follow-up
E203:Humor in Chronic Illness with DoodleThru Creators Mike & Jill Brook
E202: Dr. Theo Theoharides on mast cells driving dysautonomia and much more - Mast Cell Matters
E201:Allie
E200: Dr. Leticia Soares, PhD on female reproductive health concerns associated with long COVID, POTS, EDS, ME/CFS
199: Listener Q&A with Dr. Tania Dempsey — Mast Cell Matters
E198:POTS Diaries with Arianna from Indiana
E197:Dr. David Kaufman on ME/CFS, MCAS, POTS and complex disorders - Mast Cell Matters Series
E196:Jolie is Miss Chattanooga, spreading awareness of POTS at the Miss Tennesee Pageant
E195: Kelley from Maryland
E194: Podcasts as a Form of Social Support with Dr. Melanie Finney and Kate Pederson
E193: Psychological Experiences of POTS Patients with Dr. Alissa Sheldon
E192: POTS Diary with Erin from Connecticut, who loves to write
E191: Dr. Jeffrey Boris on MCAS, POTS, hypermobility and pediatric cardiology as part of the Mast Cell Matters Series with Dr. Tania Dempsey
E190: Possible Causes of Brain Fog, Dizziness and Nausea in POTS with Dr. Cathy Pederson
E189: Functional Medicine Nutrition with Megan Barnett
E188: POTS Diary with Erica from California, an actress and dancer
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