Archive for the ‘Ehlers-Danlos Symptoms’ Category

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4 Tips on How To Navigate School as a Student with Ehlers-Danlos Syndrome

Posted on March 1, 2023

Living with Ehlers-Danlos Syndrome (EDS) as a high school student can be especially challenging. The normal struggle of balancing academics, extracurriculars, and social life, all while trying to figure out who you are as a person, is overwhelming for most teenagers and is made more complicated when having to manage a chronic illness. Many times, […]

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Unaccommodating Accommodations

Posted on February 26, 2023

I want to be okay. Some days I am. But some days, it feels like my words slosh about disjointed. My eyelids are heavy shades that won’t stay open. Pain suffuses every joint in my body, and the throbbing in my head makes it impossible to tolerate light or noise. Day-to-day is unpredictable, sometimes moment […]

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Book Review: The Bendy Twisty Zebra by Kimby Maxson

Posted on February 23, 2023

Move over, Dr. Seuss! Make room on children’s bookshelves for The Bendy Twisty Zebra written by Kimby Maxson and illustration by Ron Houchens. With colorful characters, catchy rhymes, and a heart-felt message, The Bendy Twisty Zebra brings to mind some of Dr. Seuss’s famous books. While children of all ages (even grown-up children!) can enjoy […]

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Surgery Prep: Meeting Your EDS Hospital Stay Needs

Posted on February 22, 2023

How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]

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EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS

Posted on January 27, 2023

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 community. All films are produced by journalist and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You can […]

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Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients

Posted on December 23, 2022

For our January newsletter, journalist Karina Sturm spoke with rare disease advocate Nthabeleng Ramoeli. Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. The young woman relentlessly fights for improved access to health care for rare disease patients in her home country and […]

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Mitch Martow on his EDS journey and the documentary Bend or Break

Posted on December 22, 2022

For our January Chronic Pain Partners Post, journalist Karina Sturm spoke with Mitch Martow, an EDS advocate from Toronto, Canada. Martow is best known for being the focus of the 2021 released Canadian EDS documentary Bend or Break. In this interview, you’ll get close to Martow and his humorous side while he shares how he […]

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Living With EDS: Judgment from Others

Posted on March 25, 2019

“When you judge another, you do not define them, you define yourself” – Wayne Dyer Living with Ehlers Danlos Syndrome (EDS) is like being a doll that is stitched together but whose stitches are slowly coming apart at the seams.  You know it, you feel the pain but are powerless to stop it. You have […]

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