Ep. 52 Interview Jan Groh: What is This Mysterious Ehlers Danlos Syndrome?

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. Notes: 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 http://ohtwist.com/when-else-to-suspect-ehlers-danlos-syndrome 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 MCADs: http://ohtwist.com/what-is-mcad/when-to-suspect-mcad Dr. Diana Driscoll’s Website: https://prettyill.com/ Dysautonomia: http://ohtwist.com/wherefor-art-thou-dysautonomia 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 https://issuu.com/markmartino8/docs/eds_nutrition_and_supplements_heidi Madora's great recovery story with daily Vitamin C injections: http://lessflexible.com The Cusack Protocol: https://ouredsjourney.weebly.com/ Prolotherapy: https://www.healthline.com/health/prolotherapy Stem Cell Therapy Story: https://www.chron.com/neighborhood/woodlands/news/article/Woodlands-teen-overcomes-rare-disease-to-walk-6715196.php 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 Homepage: www.quaxpodcast.com Music by Jenny Jahlee from Live at KBOO