Jan Groh Oh TWIST author

Patient Leader

I'm helping to shed light on a "twisted" condition involving hypermobility that isn't rare, just rarely diagnosed, and often mistaken for Chronic Fatigue Syndrome and Fibromyalgia. It takes ten years on average to diagnose people with either hypermobility spectrum disorders or EDS, and many are never recognized still. This has to change! I tweet and blog daily about the condition, and just helped the Royal College of General Practitioners in London to launch and #EDSToolkit for doctors to help recognize it sooner. I'm now working on a book as well. Help me spread the word! TY!


Portland, OR


Best in Show: Twitter Healthcare Collaborator: Patient

She distills a complicated disease condition into language laymen can understand. Because she suffers from EDS and many of its co-morbidities it is easy to relate symptoms, diagnosis assistance, treatment options and issues to talk to your doctor about. She offers lots of resources to find additional information that validates everything posts.

Digest complex EDS and related disease info and presents it in terms the average person understands. She suffers from EDS and can relate easily to others with EDS. She is passionate about getting people diagnosed and help managing with this debilitating disease. She runs local education meetings and is active on all social media to get relevant out

She suffers with EDS and is passionate about helping others diagnose and find treatment for debilitating disease. She takes complex info and puts it into terms for average person. Very active on social media helping anyone she can manage with these diseases and conditions. Runs local meetings and groups for EDS, MCAD and Autism support.  — Esther

Jan has dedicated an obscene amount of time, care, and practical sensibility to helping thousands of patients with similar conditions to her own to access the understanding, information, care, and support that they need. Her work with the recent EDS GP toolkit and her well stocked website are of particular note. She knows more than the doctors do!  — Eleanor

Jan Groh speaks up for those of us living with hypermobility and struggling for recognition and treatment from doctors who may or may not understand all the implications of connective tissue laxity and related comorbidities including dysautonomia and mast cell activation. I and many other people find support and guidance via her online presence.

Jan is the ultimate patient advocate and educator. She takes time to create and run FaceBook support groups, as well as continuously posting to Twitter, despite her own serious health issues and fatigue. She supports people in all the stages of discovery - from the moment of suspicion to diagnosis and full realization. She's a true inspiration.  — Heather

Jan Groh Oh TWIST author

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