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.


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

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  

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