Articles
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 […]
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 […]
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 […]
Posted on February 21, 2023
Creating an emergency plan document is essential for patients with Ehlers-Danlos syndrome (EDS) and its many comorbidities, especially allergic or mast cell activation reactions. Take time to prepare in advance for an emergency before you get hit by a crisis by following these step-by-step instructions for your own safety and well-being. Create a written plan […]
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 […]
Posted on January 25, 2023
New research by a German group of scientists published in the European Journal of Neurology seeks to understand if there is an underlying common cause among hypermobile EDS (hEDS), small fiber neuropathy (SFN), and postural orthostatic tachycardia syndrome (POTS). Their research sheds light on a possible common mechanism behind those three conditions. SFN, POTS & […]
Posted on January 23, 2023
Self-compassion (and self-care) are sometimes misunderstood as selfish, self-cherishing, or self-indulgent, but this couldn’t be further from the truth, especially when you live with chronic illness or chronic pain such as Ehlers-Danlos syndrome (EDS). Self-compassion is the act of offering ourselves the same care and compassion we would give to others. It is simply the […]
Posted on December 26, 2022
When you’re doing okay, it can feel like a high, a return to normalcy even. It is hard to figure out the level of functioning that is going to allow you to get things done without making your symptoms send you into another flare. It’s a tiny little fine line between doing too much and […]
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