Updated: Feb 14
Historically seen as a rare genetic difference of little interest to medical professionals - taught to "look for horses, not zebras" - Ehlers-Danlos Syndrome (EDS) may be be far more common than previously thought, particularly in its 14th Hypermobility (HSD) form. It is increasingly understood not only to result not only in physical challenges but also potentially neurodiversity like Autism and ADHD.
Fortunately, thanks to improved classification of symptoms and better awareness of its wide variability, EDS and HSD are starting to appear on the radar of doctors and diagnosis is increasing.
This matters, because although treatments are still lacking, diagnosis alone can provide enormous relief and improve quality of life by
Freeing from sometimes decades long diagnostic odysseys
Providing life changing recognition and validation
Giving access to highly supportive communities
Allowing for well-informed self-management
Avoiding potentially damaging mistreatments.
Thanks to Professor Lara Bloom's success in uniting the Ehlers-Danlos Society into single global organization, it has been able to act as a one-stop source of information and support for people with EDS, accelerate health care provider awareness, increase diagnosis rates, raise millions of dollars for research, and fast-track the perspective of future treatments and cures.
* Professor Lara Bloom is President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases related to Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. Commemorating ten years in the field of patient advocacy, Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.
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