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.
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
E187: Dr. Anjali Agarwal, Consulting Physiotherapist and Awareness Beacon in India
E185: POTS Diary with POTSpouse Tim and Leah
E184: Breast Implant Illness and MCAS with Breast Surgeon Eva Nagy, MD as part of the Mast Cell Matters Series
E183: Nutrient Deficiencies in POTS with Nutritionist Jill Brook
E182: Diary with Quinton, a fitness enthusiast and Long COVID POTS patient
E181: Venous Insufficiency in POTS with Dr. Alexis Cutchins
E180: Diary with Emily, an urgent care medical assistant who developed POTS
E179: Diary with Leah, a bedbound mom who developed POTS after acute illness
E178: Psychiatric Manifestations of MCAS with Dr. Janet Settle as part of the Mast Cell Matters series
E177: Gender Matters in Perceived Burdensomeness in POTS Patients with Dr. Cathy Pederson
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E176: POTS Diary with Hanna, a museum educator in Oregon
E175: Graded Exercise and Pacing in POTS with Dr. Catherine Lewan
E174: Building Resilience with Dr. Katie Gorman Ezell and her student Katie
E173: POTS Diary with Kaylee, an ER nurse whose first symptom was blue legs
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