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 overlapsHow common hypermobility syndromes are currently diagnosedThe nature of the HSD/hEDS “spectrum” as a spectrum of variety, in addition to severityThe history and limitations of the Beighton Scale as an assessment for generalized hypermobilityThe imperfect nature of current diagnostic criteria and how the diagnostic landscape is evolvingWhy HSD/hEDS present a confusing clinical picture for many medical practitionersSome systemic barriers within the medical system that prevent early diagnosis and treatment for this patient populationThe 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-diagnosisWhy medical appointments are often so anxiety-provoking for bendy peopleThe validation and empowered action that can stem from diagnosis How having a clear diagnosis can help reduce anxiety and support nervous system regulationThe overwhelm that can stem from diagnosisHow a good working hypothesis can be just as good as a diagnosis for some peopleHow focusing on the basic pillars of overall health is always a good place to start -- appropriate movement, nervous system regulation, nutrition, and sleep.