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 Abbey 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...
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 Abbey 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 Abbey'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, Abbey 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 Abbey 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.
Abbey 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, Abbey 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, Abbey went from frequent full dislocations to none, and movement can be tailored to activities people love rather than being purely prescriptive.
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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/@bendybodiespodcast
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LinkedIn: https://www.linkedin.com/in/hypermobilitymd/
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Want to learn more about the UVA EDS Center?
For Appointments and Questions: RUVAEDSCenter@uvahealth.org
UVA EDS: https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic
UVA EDS FAQ: https://www.uvahealth.com/support/eds/faq
UVA Pediatric Integrative Medicine: https://childrens.uvahealth.com/specialties/integrative-health
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