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EDS Advocates to Follow on Social Media

The Ehlers-Danlos Syndromes may be considered a group of (mostly) rare connective tissue disorders; however, our community is more diverse and stronger than ever, with many advocates sharing their experiences and knowledge via social media.…
A bright background with a serious looking girl in the foreground. She has long blonde hair and brown eyes. Title: Take care of Maya
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New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations

[CW: Suicide] Netflix has just released the highly anticipated documentary, "Take Care of Maya," which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by…
A female doctor with a blue surgical robe and a blue cap holding up a purple stethoscope.
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Mastering Appointments Successfully With EDS

Content: Becoming a Professional Patient: Why is it Necessary? Medical Gaslighting Challenges for Medical Professionals and Consequences in Patient Care  Becoming the Professional Patient Before the Appointment During the…
Caitlin, a woman with long red hair is sitting on a chair in her backyard. The sun is shining. She wears a blue shirt and sits in front of a gigantic orange tree with lots of oranges and green leaves.
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We Are Visible (Too), Episode 2: Caitlin O’Donnell

We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible  – a feature-length film about people with EDS – journey and add…
Billie Eilish, a woman with black shoulder-long hair all dressed in black.
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Popular People With Ehlers-Danlos Syndrome

Over the last years, more and more famous Hollywood stars have come out with having been diagnosed with Ehlers-Danlos syndrome, sharing their journey on social media and with the press to raise awareness. For EDS Awareness Month, Chronic Pain…
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…
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…