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.
E38: POTS Diary with Sandy from New York
E37: Relationship between POTS and Ehlers-Danlos Syndrome (EDS) with Dr. Cathy Pederson
E36: POTS Diary with our own Jill Brook
E35: POTS Diary with Mike from Arizona - from bedbound to the basketball court
E34: New Theory about POTS with Dr. Svetlana Blitshteyn
E33: POTS Diary with Cartoonist Rachel from Wisconsin
E32: POTS Diary with Sarah from Minnesota
E31: How POTS Affects Men: Mental Health Findings with Dr. Brooke Wagner and Dr. Cathy Pederson
E30: POTS Diary with Jackie from Arizona
E29: Is Myalgic Encephalomyelitis or Chronic Fatigue Syndrome Part of your Picture?
The POTSie who saved Christmas — A silly poem
E28: POTS Diary with Henry from the United Kingdom
End of Year Giving
E27: Building Blood Volume with Nutritionist Jill Brook
E26: POTS Diary with Keeya from Minnesota on Blogs, Dogs, Ticks and Humor
E25: Q-Collar as a Potential Treatment for POTS, with Dr. Heather Edgell
E24: POTS Diary with POTSpouse Mike B. from California
E23: What to do when you've been gaslighted with Dr. Katie Gorman-Ezell
E22: POTS Diary with Dysautonomia Support Network President Brooke O'Shea
E21: Mast Cells Causing Mayhem with Doctor of Naturopathy Beth O'Hara
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