Posts

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 Kingdom,”…
An illustration of a black DNA with a blue circle in the middle and text: Norris Lab.
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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…
A comic-like illustration of a Zebra with a golden microphone in front and text: EDS & Aging, New Project
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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.…
Karina, a woman with short brown hair leans against a wall on a balcony during sunset. She wears a white hoodie and holds a glass of wine in her hand. In the background you can see an old church and many older houses.

Cheers, to a new New Year’s Eve tradition: Gratitude

Can you believe that the year is almost over? Again? I feel like since the pandemic started, time has flown but also stood still at the same time. Unlike 2020 - we can all agree that 2020 should just be canceled entirely, right? - I have mixed…
A woman stands on a wooden walkway of a lake and looks into the distance with a threatening dark and cloudy sky above
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Chronic Illness, the bad days & coping

“Wow, I feel like my condition has stabilized a bit. Finally, I can take part in regular life again!” I thought a few weeks ago. Life has been challenging throughout 2020. Actually, challenging isn’t even the right word. It has been a…
Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick.
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Raising awareness for EDS: I was a guest in several podcasts and blogs!

Ehlers-Dan… What? Most people - and sometimes even medical professionals - do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness.…