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.
E172: Pain and Hypermobility with Dr. Linda Bluestein as part of the Mast Cell Matters series
E171: Post-Gardasil POTS Litigation with Attorney Drew Downing
E170: Dehydration, thirst, POTS and long COVID with Dr. Harriet Carroll
E169: Live Recordings from 10th Annual SUTP 5K/2K
E168: Headache Management in POTS with Dr. Karissa Arca
E167: Listener's Questions Answered with Dr. Cathy Pederson
E166: POTS Diary with Lauren, a tennis player who developed POTS with Long COVID
E165: Documentary on The Triad with Dr. Leonard Weinstock and Dr. Tania Dempsey as part of the Mast Cell Matters series
E164: POTS after the COVID vaccine with Rachel Hellman, NP
E163: POTS Diary with Courtney, a dog lover from Texas
E162: Eating Disorders in Chronic Illness with Krista Day-Gloe
E161: Heart Rate Variability and Biofeedback with Rohan Dixit
E160: POTS Diaries with Jolie from TN, a mental health advocate who loves to cook
E159: Cardiac manifestations of MCAS with Dr. Andrew Maxwell as part of the Mast Cell Matters series
E158: POTS Diary with Mikayla from Ohio, a college student who loves to run
E157: POTS Diary with Jessica from North Carolina, a college student who loves to skateboard
E156: POTS Diary with Katie, an artist, cosmotologist, and proud mom of 3
E155: POTSmom Alison from Nebraska, her daughter developed POTS after concussion and worsened after vaccination
E154: POTS Diaries with Thomas, a high level jiu jitsu athlete who developed POTS at 20
E153: POTS Diary with Michael who has long COVID after acute infection in 2020
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