Posts

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…
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…
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…
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…
A comic-like illustration of a Zebra with a golden microphone in front and text: EDS & Aging, New Project

EDS & Aging

The EDS & Aging Project Funny Bone Newsletter - March 2022 presented by EDS Awareness This is a community-centered project with people older than 45 who want to share their experiences about aging as a person with EDS.…
A woman with shoulder-long blonde hair sits on a blue exercise mat. She wears black pants and a black tank top and lifts her left arm up to her side. Text: The Zebra Club.

Jeannie Di Bon’s Zebra Club App – A Review

“Wow,” was the first word that came to my mind when I started to exercise with Jeannie Di Bon’s new program: The Zebra Club. My feelings regarding Jeannie’s new app were very similar to when I read Diana Jovin’s book Disjointed, which…