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.…
Many cells connected by extracellular matrix
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Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS

A recent publication by scientists at Tulane University's EDS clinic proposes a possible new mechanism behind hypermobility: folate dependency. The researchers hypothesize that MTHFR mutations may lead or contribute to a form of hypermobile…
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…
An illustration of a blue and purple nerve cell and a magnifying glass on yellow background. Text: New research on EDS, POTS & SFN. Small Fiber Neuropathy is a Common Feature in HEDS, Research Finds.
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Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds

New research by a German group of scientists published in the European Journal of Neurology seeks to understand  if there is an underlying common cause among hypermobile EDS (hEDS), small fiber neuropathy (SFN), and postural orthostatic tachycardia…
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…
Two people in a physical therapy office standing next to each other. A woman with short brown hair and a white shirt and pink skirt smiles brightly. Next to her stands a man with a blue shirt and a stethoscope around his neck who also smiles brightly.
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Where physical therapy ends and magic begins: Healy Physical Therapy and Sports Medicine

“He helped my daughter get from being bedridden to going back to college,” says Michele Pestana when I meet her at Healy Physical Therapy and Sports Medicine in Providence, Rhode Island, on a hot summer day in July 2022. Pestana is…
A woman with long brown hair hanging over her left shoulder sits on a chair with her right arm under her chin. She wears a brown sweater and sits in a bright white room.

Meghan O’Rourke and The Invisible Kingdom

As part of our monthly Chronic Pain Partners Post Newsletter, I had the pleasure of speaking with Megan O’Rourke, a fellow Zebra, but more importantly, journalist and author who recently published the bestselling book “The Invisible…