Jan Groh is a database programmer, musician, and photographer. In 2012, she was hit with an Ehlers Danlos storm and lost the ability to walk. After years of research and advocacy, she is walking again and sharing what she knows about Ehlers Danlos.
Jan has experienced a myriad of health difficulties all her life. Chronic Fatigue, environmental sensitivity, fibromyalgia, and depression to name a few. For years Doctors refused to believe her symptoms were even real. Jan does everything she can to educate doctors and patients on this genetic disease so others do not suffer years in limbo.
In this interview, Jan gives a breakdown on everything you need to know if you may have a hypermobility disorder. They are more common than doctors suspect and explain a wide variety of symptoms.
Jan’s Website: http://ohtwist.com
Jan’s Patreon: http://patreon.com/JanGrohTWIST
When to Suspect EDS (and HSD now): http://ohtwist.com/about-eds/when-to-suspect-eds
How to Diagnose EDS: http://ohtwist.com/about-eds/diagnosing-eds
Common Comorbidities: http://ohtwist.com/about-eds/comorbidities
More Comorbidities: http://ohtwist.com/the-chronic-constellation
Dr. Diana Driscoll’s Website: https://prettyill.com/
Resources for Doctors and EDS toolkit: http://ohtwist.com/about-eds/for-doctors
Nutritional guidelines from Dr. Heidi Collins, fellow EDS patient: https://ehlers-danlos.com/wp-content/uploads/Collins-Magnesium-and-EDS.pdf
Madora’s great recovery story with daily Vitamin C injections: http://lessflexible.com
The Cusack Protocol: https://ouredsjourney.weebly.com/
Warm water therapy, and Muldowney Protocol: https://www.muldowneypt.com/ehlers-danlos-syndrome-information/
Need help starting an EDS support group? (John Ferman): http://edsawareness.com
Another Support Group: https://www.ehlers-danlos.com/affiliates-support-groups-and-charities/
Jan’s Facebook Group: https://www.facebook.com/groups/OHTWISTandHSD/
Jan’s MeWe group: https://mewe.com/join/ohtwist
Music by Jenny Jahlee from Live at KBOO