85. Making a MCAS Documentary with Drs. Weinstock, Dempsey, Bluestein, Afrin, Kinsella & Jill Brook, MA

In this Bendy Bodies with the Hypermobility MD podcast episode, making a MCAS documentary is discussed.  Distinguished participants in this collaborative effort include Dr. Leonard Weinstock, Dr. Larry Afrin, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, alongside dedicated patient advocate Jill Brook.   

YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.

Key Highlights:

1. The initiative incorporates both a documentary and an online educational library strategically designed to elevate awareness surrounding MCAS, Dysautonomia, and Hypermobility Spectrum Disorders.

2. Renowned healthcare professionals, namely Dr. Leonard Weinstock, Dr. Larry Afrin, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, in conjunction with patient advocate Jill Brook, are pivotal contributors to this initiative.

3. The documentary aspires to elucidate the myriad challenges confronted by individuals navigating the complexities inherent in the triad of syndromes, emphasizing the imperative of heightened awareness among healthcare providers to facilitate more efficacious treatment modalities.

4. Dr. Afrin underscores the prevalence of MCAS and advocates for its consideration in the differential diagnosis for patients with complex medical presentations.

5. The term "dystrophism" is introduced within the discourse, signifying aberrations in growth and development propelled by dysfunctional mast cells.

6. Participants candidly share their experiences during the documentary's filming process, underscoring the inherent difficulty of condensing intricate information into concise soundbites.

7. The timely recognition of MCAS is underscored as a critical determinant for effective treatment interventions and an enhanced quality of life.

8. The team is dedicated to elucidating the nuances of MCAS, POTS, and EDS through the medium of a documentary, with the aim of providing comprehensive knowledge about these medical conditions.

9. Emphasis is placed on the significance of joint hypermobility. Should it give rise to complications, it may serve as a potential indicator for dysautonomia or MCAS.

10. Dysautonomia serves as an encompassing term, inclusive of conditions such as POTS and Inappropriate Sinus Tachycardia. 

11. Identifying growing pains (quite literally!) associated with these conditions can be a challenging endeavor. The gradual development poses a considerable challenge for all involved.

12. A fervent commitment is made towards establishing an educational repository, replete with in-depth explorations by experts, delving into the intricacies of these subjects.

13. The team candidly discloses the necessity for financial support to conclude their documentary project. Their overarching objective is to disseminate awareness about MCAS, POTS, and EDS.

14. The documentary, at its core, is designed to render this information easily accessible, ensuring that individuals – be they patients, families, or clinicians – can acquire a comprehensive understanding of coping with these conditions.

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

Connect with YOUR Bendy Specialist, Linda Bluestein, MD!
 
Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/.      

YOUR bendy body is our highest priority!

Products, organizations, and services mentioned in this episode:

https://www.mcasfund.org/
https://aimcenterpm.com/
https://www.gidoctor.net/leonard-weinstock-md
https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md
https://www.hypermobilitymd.com/
https://www.standinguptopots.org/

#MCAS #film #documentary #HealthJourney #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #POTS #Dysautonomia #BendyBuddy #HypermobilityMD  #BendyBodies #UnexplainedHealthIssues #POTSsyndrome #MastCells #PainManagement  #PatientAdvocacy

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