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.
E131: Sofie from MI and her research on Emotional Intelligence
E130: Health Willpower Strategies with Nutritionist Jill Brook
E129: MCAS Diagnostic Criteria “Consensus-2" with Dr. Lawrence Afrin as part of the Mast Cell Matters series
E128: Belle from Canada, saline and physiotherapy helped her walk across her graduation stage
E127: New Clues in Plasma Proteins in POTS Patients with Dr. Artur Fedorowski
E126: Home Infusions with Jonathan Abraham, RN BSN CCRN
E125: POTS Diary with Dr. Alisha Alls, who suffered traumatic brain injury leading to her POTS
E124: Pregnancy in POTS Patients with Nurse and Doctoral Candidate Kate Morgan
E123: Argenx Clinical Trial on Post-COVID POTS
Research Study on The POTScast - please participate!
E122: Mast Cell Matters: Diagnosis and Treatment of MCAS with Dr. Tania Dempsey
E121: Diary with Shelby from KY, a mom who loves to sing and have fun
E120: Autoimmune Diet with Nutritionist Jill Brook
E119: Service Dogs with Trainer Mary McNeight & POTS patient Makenzie
E118: From a POTS Mom's Perspective, Paula from California
E117: POTS Triggers with Dr. Cathy Pederson
E116: Compass Points the Way, a book about living with POTS with author Alexis Kline
E115: Mast Cell Matters: Intro to MCAS with Dr. Tania Dempsey
E114: Rachel from New York, a baker whose life was changed by COVID
E113: Academic POTS in Australia and Life as a POTS Mom with Celine Gallagher, PhD
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