Bendy Bodies with Dr. Linda Bluestein

The Roadmap That Could Change EDS Forever with Lara Bloom (Ep 176)

13 snips
Dec 23, 2025
Guest
Lara Bloom
Lara Bloom, President and CEO of The Ehlers-Danlos Society, is a dynamic patient advocate focused on transforming care for those with EDS and HSD. In this conversation, she unveils the ambitious Road to 2026, aiming to align global policies and education. Blooms discusses the urgent need for early diagnosis, highlights research gaps, and critiques outdated medical attitudes. With insights into the Society's evolving strategies, Lara inspires hope for meaningful changes in care and advocacy, urging patients to actively participate in their health journeys.
Ask episode
AI Snips
Chapters
Transcript
Episode notes
INSIGHT

Immune Dysregulation As A New Lens

  • Multiple independent studies using HEDGE samples point toward immune dysregulation in hypermobile EDS rather than a single-gene cause.
  • This shifts research focus toward neuroimmune mechanisms and funded replication work could yield major advances soon.
ANECDOTE

HEDGE's Thousand-Sample Donation Fueling Research

  • The HEDGE project sequenced whole genomes from 1,000 people meeting 2017 hEDS criteria and revealed no single-gene cause.
  • The donated samples now power many follow-up studies and a growing global biobank for broader molecular research.
INSIGHT

Comorbidities May Become Diagnostic Factors

  • Mast cell, GI, autonomic and bladder dysfunctions cluster frequently with hypermobile EDS, prompting consideration of comorbidities in diagnostic criteria.
  • The HEADS and HSD criteria study may include these comorbidities in revised classification next year.
Get the Snipd Podcast app to discover more snips from this episode
Get the app