Show Notes
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.
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Host Dr. Libby Hinsley welcomes physical therapist Dr. Laura Glazebrook to discuss scoliosis, especially its overlap with hypermobility. Laura shares her own history of rapidly progressing scoliosis, undergoing a spinal fusion at age 11, and later realizing she likely falls on the hypermobility spectrum.
Dr. Libby Hinsley welcomes menopause specialist and nurse practitioner Vanessa Weiland, founder of Phases Clinic and creator of Bendy Menopause, who also has hypermobile EDS and MCAS.
Host Dr. Libby Hinsley interviews Abbey Phillipson, a classical Ehlers-Danlos syndrome (EDS) advocate and Paralympic strength and conditioning coach at the University of Michigan. Abbey shares her experience with early signs, diagnosis via genetics (COL5A1), and serious complications of Classical EDS.
Host Dr. Libby Hinsley interviews pelvic floor physical therapist and author Dr. Amy Stein, founder of Beyond Basics Physical Therapy. Stein discusses the strong overlap she sees between hypermobility and pelvic floor dysfunction (estimating about 70% of her patients), including patterns of pelvic floor gripping used for stability, pelvic pain, prolapse, hernias, constipation/IBS symptoms, possible pelvic congestion, and bladder, bowel, and sexual dysfunction across all genders.