Posts

Dr. Wolf, a woman with short, curly brown hair, black glasses and a yellow face mask.
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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…
Jacques Courseault, a black man with black hair and black glasses. He wears a blue shirt and a green bow and lifts up the arm of a black woman with a tattoo on her arm in an examination room.
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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.…
Elan Schneider, a bald man, wearing white headphones and glasses.
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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…
Dr. Lilian Holm on EDS & Physical Therapy. Dr. Lilian Holm, a woman with shoulder-long brown hair and bangs, is sitting in her office, which is a large room with a turquoise wall behind her and an open fireplace. She sits on a beige chair and wears a black shirt and a delicate golden necklace. In the background is a treatment bench in the foreground two red flowers.
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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…
A super close up of a woman's face. She is smiling slightly and wears huge silver earrings and red lipstick.
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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…
Two people are sitting in beige office chairs in front of a white wall. Dr. Gensemer is a woman with long, wavy blonde hair. She wears a blue shirt and white pants and has flower tattoos on her arm. Next to her sits Dr. Norris, a man with short brown hair, grey glasses, a blue shirt and a dark blue jacket on top.
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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…
An image of a woman rubbing her neck with her hands. She has long brown hair and closed eyes. Red text on green background: Book Review. Chronic pain is a bitch! Don't let it turn you into one.

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…
Sarah, a woman with long blonde hair sits on her bed with a big box of medication in front of her.
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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…
A photo of Dr. Chopra, a man with short brown hair and glasses. Next to him is an image of Karina, a woman with short brown hair and leaf-shaped dangling earrings. Next to her is the EDS Awareness Logo with text: Interview, Dr. Chopra & Karina Sturm, Psychological aspects of EDS - Dr. Chopra’s Statement explained.

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…
An illustration of a black DNA with a blue circle in the middle and text: Norris Lab.

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…
A person with rainbow colored hair that are shaved on the sides. The person wears a black tank top and holds a fluffy white dog.

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…
A woman with long brown hair bound to a ponytail sits in her garden on a chair with giraffe pattern. She smiles, wears a black shirt and sunglasses on top of her head.

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…