Could lumping every type of Ehlers-Danlos syndrome under one umbrella actually be doing more harm than good?
In this thought-provoking episode, host Dr. Linda Bluestein, the Hypermobility MD, is joined by Abby Phillipson, who was born with COL5A1 classical Ehlers-Danlos syndrome, survived the first recorded non-traumatic pediatric spondyloptosis, and now serves as Head Strength Coach for Paralympic and Adaptive Sports at the University of Michigan and founder of the Collagen Advocacy Network.
Inspired by Abby's powerful presentation at the UVA Research Symposium, this conversation challenges long-held assumptions about how we define, discuss, and advocate for Ehlers-Danlos syndrome. Although hypermobile EDS has dramatically increased public awareness, Abby argues that people living with rare and ultra-rare EDS types, representing just 1 to 3 percent of the community, are too often overlooked in research, funding, clinical care, and even public conversations.
Together, Dr. Bluestein and Abby explore whether the different EDS types should continue to share a single name, why distinguishing hypermobile EDS from the genetically defined types could ultimately benefit everyone, and how naming disorders by their underlying gene and predominant manifestation might improve diagnosis, research, and patient care.
Abby also shares deeply personal stories that illustrate what's at stake, including a friend who spent 35 years carrying the wrong diagnosis before genetic testing revealed kyphoscoliotic EDS. Their conversation highlights why genetic counseling matters, the limitations of direct-to-consumer testing, and how assumptions in medicine can unintentionally delay appropriate care.
The episode closes on a message of hope and empowerment. After her neurosurgeon prescribed strength training, Abby transformed from experiencing monthly full-joint dislocations to having none. Today, she helps athletes and people of all abilities discover that movement can be adapted, strength can be built, and disability does not define potential. She also shares why advocacy is most effective when it channels frustration into meaningful, solution-focused action, plus one of her favorite protein-packed hypermobility hacks.
Takeaways:
People with rare and ultra-rare EDS types make up only about 1 to 3 percent of the community and are frequently left out of decisions about research, funding, and care.
Clearly distinguishing hypermobile EDS from the genetically defined types benefits everyone; naming a condition by its gene and predominant manifestation could improve medical clarity and care.
The "invisible illness" framing can cause genuinely visible rare types to be overlooked, and comfort with a clinical diagnosis can lead to decades-long misdiagnoses that genetic testing would catch.
Genetic testing and counseling are essential, especially before starting a family; direct-to-consumer testing carries real limitations and should be interpreted cautiously.
Strength training can be transformative: after her neurosurgeon prescribed it, Abby went from frequent full dislocations to none, and movement can be tailored to activities people love rather than being purely prescriptive.
Want more Abbey Phillipson?
Instagram: @abbeyphillipson @definedbycollagen
Website: collagenadvocacynetwork.org
Want more Dr. Linda Bluestein, MD?Website: https://www.hypermobilitymd.com/YouTube: https://www.youtube.com/@bendybodiespodcastInstagram: https://www.instagram.com/hypermobilitymd/Facebook: https://www.facebook.com/BendyBodiesPodcastX: https://twitter.com/BluesteinLindaLinkedIn: https://www.linkedin.com/in/hypermobilitymd/Newsletter: https://hypermobilitymd.substack.com/Shop my Amazon store https://www.amazon.com/shop/hypermobilitymdDr. Bluestein's Recommended Herbs, Supplements and Care Necessities: https://us.fullscript.com/welcome/hypermobilitymd/store-start
Want to learn more about the UVA EDS Center?
For Appointments and Questions: RUVAEDSCenter@uvahealth.orgUVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinicUVA EDS FAQ: https://www.uvahealth.com/support/eds/faq
UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health
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.
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