In my blog, I’ll share with you my experiences as a chronically ill and invisibly disabled advocate and journalist.

A collage of several images in varying colors of social media icons and the face of a person
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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.…
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A New EDS Clinic Coming to a Town Near You (Via Telehealth)

Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February…
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…
A Lego figure showing a grandma in a wheelchair with a supergirl shirt. Next to is Rita, the actual grandma with grey hair.
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Lego Oma

Lego Oma One-Liner:  Lego Oma is a short film about a quirky German grandma who builds wheelchair ramps from Lego.  Rita Ebel Melle Summary:  Lego Oma is a 12-minute micro-budget short documentary about Rita…
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…