Lara Bloom, Professor of Practice in Patient Engagement and Global Collaboration
- President and CEO of The Ehlers-Danlos Society.
- Professor of Practice in Patient Engagement and Global Collaboration, Penn State College of Medicine.
- Vice-Chair of the Board, International Alliance of Patients’ Organizations (IAPO).
- Trustee, Genetic Alliance UK.
My personal experience and approach
I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) at the age of 24, after a 13-year diagnostic odyssey that began in my early teens. My lived experience of navigating a complex and poorly understood condition has shaped both my professional path and personal commitment to advocacy.
Over the past decade, I’ve led global awareness campaigns, contributed to clinical education and research efforts, and worked alongside leading medical institutions and patient communities to transform care and understanding of EDS and HSD.
My approach to health is rooted in empowerment: ensuring those with lifelong, multisystemic, and often invisible conditions feel seen, believed, and supported throughout every step of their journey.
For those of us living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), movement is not just exercise, it is medicine. It can be the difference between functioning and flaring. Between resilience and regression.
Safe and appropriate movement requires access to resources that so many in our community simply don’t have. Specialist physiotherapists. Adaptive equipment. Environments free from judgment. Support systems that understand. Pain management. Financial stability. The ability to pause and rest without fear of losing income, care, or independence.
Too many face gaslighting instead of guidance. They're told it's all in their heads, or that moving will only make things worse. Some are left without answers for years, watching their bodies deteriorate when they could have been building strength, confidence, and autonomy with the right support.
We say movement is medicine, but for it to truly be medicine, it has to be safe, accessible, and equitable. We cannot celebrate movement without acknowledging the barriers that prevent so many from achieving it.
I’m not just encouraging safe movement, I’m continuing to advocate for a world where everyone with EDS and HSD has the chance to move without fear. To move with dignity. To move towards healing.
