Posts

EDSed Episode 4: Dr. Jacqueline Wolf on GI symptoms & Endometriosis
EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our…

Folate-dependent Hypermobility: Discussing Tulane’s Recent Paper With Their Scientists
A recent publication by researchers at Tulane University hypothesizes MTHFR mutations lead to folate deficiency, resulting in hypermobility. The researchers also propose these mutations may cause or contribute to a form of hypermobile EDS.…

PT Elan Schneider on Neuroplasticity and New Approaches to Treat Chronic Pain
Widespread chronic pain is one of the main symptoms for people with any type of Ehlers-Danlos syndrome and can be debilitating. At the same time, many common treatment options, particularly with pain medication, lead to side effects. But what…

EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS
EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our…

Hi, this is me: Karina
Hello, and welcome to my Blog about all things chronic illness and disability.
My name is Karina, I am a German native but have been residing in San Francisco for six years now, and I live with a variety of chronic conditions, including…

EDSed Episode 1: The Norris Lab
EDSed is our new series of full-length interviews with international EDS experts.
These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for…

Book Review: Holding It All Together When You’re Hypermobile
For our Chronic Pain Partners Post edition of November 2022, I reviewed author and fellow zebra Christie Cox's new EDS book called Holding It All Together When You're Hypermobile. In this article, we will provide more information on the book's…

We Are Visible Too! Episode 1: Sarah Rightmire
We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, I will continue on the We Are Visible - a feature-length film about people with EDS - journey and add a…

Interview with Dr. Pradeep Chopra regarding the psychological and psychiatric aspects of the Ehlers-Danlos syndromes and hypermobility spectrum disorders
Introduction
EDS expert and pain specialist Dr. Pradeep Chopra contacted Chronic Pain Partners to speak about a recently published review on the psychological and psychiatric aspects of Ehlers-Danlos syndrome. Dr. Chopra has been…

Interview with Dr. Norris on finding the genetic cause(s) for hypermobile EDS and much more
For Chronic Pain Partners, I had the honor to speak with Dr. Russell “Chip” Norris from the Norris Lab at MUSC, a research laboratory dedicated to finding the genetic cause(s) for the hypermobile Ehlers-Danlos syndrome. Sturm speaks…

Jules Machias about their EDS journey and new middle-grade book Fight + Flight
For our Chronic Pain Partner Post newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! I had the…

Interview with EDS advocate Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children
For our Chronic Pain Partners Post newsletter, I spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares…