Zebra Talks: Living Your Best Bendy Life

Journey to Diagnosis with Lisa Sherman

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In this episode, Libby talks with Lisa Sherman about the long journey to diagnosis that many people with HSD/hEDS undertake. They explore barriers to diagnosis, the pros and cons of diagnosis, why the medical system hasn’t done a great job identifying and treating this patient population, and how things might be changing.

Some key points discussed in this episode:

  • How Lisa began her journey of specializing in the treatment of people with hypermobility syndromes 
  • How Libby and Lisa started collaborating through their personal and professional overlaps
  • How common hypermobility syndromes are currently diagnosed
  • The nature of the HSD/hEDS “spectrum” as a spectrum of variety, in addition to severity
  • The history and limitations of the Beighton Scale as an assessment for generalized hypermobility
  • The imperfect nature of current diagnostic criteria and how the diagnostic landscape is evolving
  • Why HSD/hEDS present a confusing clinical picture for many medical practitioners
  • Some systemic barriers within the medical system that prevent early diagnosis and treatment for this patient population
  • The unfortunate experience of medical gaslighting 
  • A silver lining of the covid crisis for people with complex chronic conditions 
  • What it’s like wandering in the wasteland of non-diagnosis
  • Why medical appointments are often so anxiety-provoking for bendy people
  • The validation and empowered action that can stem from diagnosis 
  • How having a clear diagnosis can help reduce anxiety and support nervous system regulation
  • The overwhelm that can stem from diagnosis
  • How a good working hypothesis can be just as good as a diagnosis for some people
  • How focusing on the basic pillars of overall health is always a good place to start -- appropriate movement, nervous system regulation, nutrition, and sleep. 
    • ...more
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    Zebra Talks: Living Your Best Bendy LifeBy Dr Libby Hinsley
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