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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
- Patients with Ehlers-Danlos syndrome often face an antagonistic relationship with healthcare professionals, leading to mistrust and negative health outcomes.
- The diagnostic odyssey experienced by patients with EDS can be likened to a hero's journey, characterized by challenges, misdiagnoses, and a long path to diagnosis.
- The panoply of symptoms in EDS and the complexity of chronic pain make it difficult for patients to describe their experiences and receive appropriate care.
- Clinician-associated traumatization is a distinct construct that captures the negative experiences and trauma patients with EDS face in their interactions with healthcare professionals.
- Building a trustworthy team of clinicians and seeking support from the EDS community can help patients navigate the challenges of their condition and improve their healthcare experiences.
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:
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
Creators & Guests
What is Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein?
Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), have far-reaching consequences. Multi-systemic symptoms affect quality of life -- with pain, frequent injury, joints “giving way," fatigue, headache, gastrointestinal problems, and insomnia being common. Welcome to Bendy Bodies with the Hypermobility MD, with your host and founder, Linda Bluestein, MD. Learn from specialists with diverse areas of medical and scientific expertise. Conversations cover topics relevant to everyone with symptomatic joint hypermobility (EDS, HSD, Marfan's). Learn to optimize your hypermobile health!