Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein
Health & Fitness:Medicine
In this episode, YOUR guest is Colin Halverson, PhD. He received his Ph.D. in linguistic and medical anthropology from the University of Chicago, where he studied communication issues in medical genetics, based on fieldwork at Mayo Clinic. At Chicago, he also completed a fellowship in clinical ethics, and then a postdoctoral fellowship in medical ethics at Vanderbilt. He is currently a professor at Indiana University School of Medicine, where his research focuses on ethical care for patients with rare disease, in particular Ehlers-Danlos Syndrome (EDS).
YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.
Takeaways
Chapters
00:00 Introduction
00:29 Dr. Halverson's Background and Research Interest
03:02 The Hero's Journey of Patients with Ehlers-Danlos Syndrome
05:51 Challenges Faced by Patients with Ehlers-Danlos Syndrome
07:02 Antagonistic Relationship with Healthcare Professionals
08:29 Impact of Antagonistic Relationship on Patients
09:47 Triggers for Transition into Unbearable Symptoms
12:36 The Panoply of Symptoms in Ehlers-Danlos Syndrome
13:44 Importance of Panoply of Symptoms in Diagnosis
15:22 Challenges in Describing Multi-Systemic Symptoms
16:26 Numeric Pain Scales and the Complexity of Chronic Pain
19:40 Research on Hypermobile Ehlers-Danlos Syndrome
20:39 Research on Other Forms of Ehlers-Danlos Syndrome
23:56 Failure of Empathy in Patient-Provider Relationships
27:24 Worse Health Outcomes and Trust Issues
28:06 Impact of Failure of Empathy on Patients
30:33 Dealing with Antagonistic Relationships
31:45 The Isolation and Invisibility of Ehlers-Danlos Syndrome
36:12 Clinician-Associated Traumatization and its Differences from Other Constructs
39:21 Surprising Aspects of the Research
42:01 Recommendations for Patients with Clinician-Associated Traumatization
45:01 Future Directions of Research
49:04 Closing Remarks
This important conversation with Dr. Halverson about clinician-associated trauma in patients with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) will leave you feeling better prepared to advocate for the care you need.
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, articles, and services mentioned in this episode:
https://bioethics.iu.edu/people/colin-halverson.html
https://pubmed.ncbi.nlm.nih.gov/34524722/
https://doi.org/10.1016/j.ssmqr.2023.100237
Dr. Halverson can be reached at chalver@iu.edu.
#InvisibleIllness #HealthJourney #PatientAdvocacy #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #BendyBuddy #HypermobilityMD #BendyBodies #EhlersDanlosResearch #MedicalGaslighting #PatientSupport #ResearchOpportunity #DiagnosticJourney
Milestones and Reflections: 100 Episodes of Bendy Bodies with Linda Bluestein, MD
99. From News Anchor to Advocate: A POTS and EDS Journey with Summer Dashe
98. Environmental Triggers of Mast Cell Disease with Tania Dempsey, MD
97. Learning to Spot the Signs of Ehlers-Danlos Syndromes with Guest Host, Kate Colbert
96. Coping with Dance Injuries and Career Transitions with Chelsea Pierotti, PhD and Guest Cohost, Jennifer Milner
95. Pain Care Redefined: Non-Drug Therapies for Pain Relief with Heather Tick, MD
94. Support and Bracing for Hypermobile Joints with Susan Chalela, MPT, and Guest Cohost, Scott Borjeson
93. Unveiling Taming the Zebra: A Discussion with Physical Therapists Patricia Stott and Heather Purdin
92. Empowering Zebra Warriors: THE Guide to Effective Physical Therapy for EDS and HSD with Lilian Holm, DPT
91. Hand Problems in EDS with Corinne McLees, OT and Hand Coach
90. Decoding Brain Fog: Expert Insights with Ilene Ruhoy, MD, PhD
89. Conquering the Sleep Struggle with Roger Seheult, MD
88. Service Dogs and Disability Rights with Tiffany Lee, JD
87. Disordered Eating in Dance with Josh Spell, LICSW, and Guest Co-Host Jennifer Milner
86. The Unfair EDS Journey with Amanda Cassil, PhD
85. Making a MCAS Documentary with Drs. Weinstock, Dempsey, Bluestein, Afrin, Kinsella & Jill Brook, MA
84. Slipping Rib Surgery in EDS with Adam Hansen, MD
83. Expert Insights: Breath Work in Pain Management with Jill Miller
81. Foot Pain 101: Everything You Need to Know with EDS and HSD with Lisa Ralston, PT
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