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.
E152: POTS Diary with Autumnizhurr, a content creator and gamer from California
E151: POTS Diary with Rebecca from New Zealand, a young nurse who had to move home to deal with symptoms
E150: Diary with POTSie Lyla and POTSmom Joli
E146: Research on Long COVID and POTS with Marie Claire Seeley
E149: Tried all the recommendations? What to do next?
E148: POTS Diary with Nicole from Texas, news reporter who got a POTS story on the Today Show
E147: Gynecological Issues & Pregnancy in MCAS with Dr. Shanda Dorff
E145: POTS Diary with POTS Parent Leigh from Washington DC
E144: Gut motility in POTS with Dr. Linda Nguyen
E143: POTS Diary with Victoria from New Jersey, a chemical engineering student and cyclist
E142: Unravelling Medical Complexities with Dr. Ilene Ruhoy and Dr. David Kaufman
E141: POTS Diary with POTSpouse Stephen
E140: Romance and Relationships in Chronic Illness with Dr. Katie Gorman-Ezell
E139: Diary with Becca, proud mom from Utah who developed POTS after food poisoning
E138: Advice from Both Sides of Healthcare with Dr. Melanie Hoppers
E137: Update on Long COVID with Dr. Noah Greenspan
E136: POTS Diary with Hannah from South Carolina, who developed POTS after a traumatic brain injury
E135: Gastrointestinal Manifestations of MCAS with Dr. Leonard Weinstock as part of the Mast Cell Matters series
E134: POTS Diary with Jessie, who was diagnosed with POTS as a teen but didn't receive treatment until much later
E133: The Foundations of Health with Dr. Gregory Plotnikoff
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