Ep. 52 Interview Jan Groh: What is This Mysterious Ehlers Danlos Syndrome?
Quax
English - February 25, 2020 00:00 - 1 hour - 71.1 MB - ★★★★★ - 22 ratingsHealth & Fitness Homepage Download Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
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