More accurate connective tissue disorder diagnoses. Shorter diagnostic odysseys. Real care after diagnosis. The Road to 2026 could reshape all of it.
On today’s episode of @bendy_bodies, I sit down with @lara.bloom, CEO of @ehlers.danlos, to discuss The Road to 2026 and the changes that are beginning to take shape in our community.
Lara speaks not only as a leader, but as someone living with hypermobile Ehlers Danlos Syndrome herself. She shares the very real anxieties and hopes that come with this next chapter, both personally and professionally, as The Ehlers-Danlos Society prepares to guide the global community through what may become a major shift in understanding.
Early findings suggest that hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are not as different as once thought and may actually represent one spectrum, one condition.
This opens up essential questions. How will this be classified? Will comorbidities be considered? How can publication of this work improve diagnostic odysseys, shorten the time to diagnosis, and move us closer to models of care that provide management and support from the moment someone receives a diagnosis?
That is not the reality right now for most people around the world. But The Road to 2026 offers an opportunity to change that. Sometimes progress requires reexamining long held frameworks, and Lara explains why this evolution is not only expected, but necessary.
💬 Question for you: What do you hope The Road to 2026 will mean for diagnosis or care in your part of the world?
#BendyBodies #DrLindaBluestein #EDS #HSD #Hypermobility #Dysautonomia #MCAS #ConnectiveTissueDisorders
📌 Medical Advice Disclaimer: This content is for educational purposes only and is not medical advice. Always consult your healthcare provider for personalized care.
VD: A video taken from the Bendy Bodies Podcast featuring host Dr. Linda Bluestein talking with Lara Bloom, CEO of The Ehlers Danlos Society, recorded from her home office.
