Dealing with EDS
28 Hours in the Emergency Room
“You have arrived at your destination,” our car’s navigation system announces. Crossing the street, I lean on my partner’s shoulder. An involuntary shudder ripples through me as I succumb to a wave of assaulting nausea followed by a sharp pain in my abdomen. I stare questioningly at the letters “gency” flickering on the neon sign […]
POTS, EDS, and the Scorching Sun: Heat Intolerance & Your Summer Survival Guide
Welcome to the sizzling chronicles of summer, a time when we embrace the sun-kissed longer days, BBQs, and hopefully beach trips! But what if I told you that for some folks, this wonderful season feels more like a daunting endurance test than a relaxing vacation? Today, we delve into the sweltering world of Heat Intolerance, […]
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 a variety of 5 – 10 minute videos of other people across the country […]
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 Partners’ Karina Sturm put together a list with popular fellow zebras, including Billie Eilish, Jameela Jamil, […]
How To Evaluate The Quality Of EDS Research Papers: A Conversation With Markus Bohn, PhD
Over the last few years, the Ehlers-Danlos syndromes have become more than just an afterthought for many researchers across the globe. However, with the growing number of academic papers published, it also got much harder for patients to evaluate the quality of those papers. Moreover, it’s incredibly challenging for people who aren’t scientists to tell […]
Pey Carter and Daughter Abigail Speak About Their EDS Children’s Book
Pey Carter, a public speaker and author from Eau Claire, WI, and their daughter, Abigail Bailey, have a children’s book about Ehlers-Danlos Syndrome in the works: Bendy Bones and Stretchy Skin: An Ehlers-Danlos Story. In addition, Pey just finished a Kickstarter for an Ehlers-Danlos coloring book and is working on a memoir of their own. […]
Zebra Mamas: Parenting a Child With EDS
The Ehlers-Danlos Syndromes (EDS) are a collection of heritable connective tissue disorders* that affect many organ systems and often come with several other conditions. It’s a genetic condition, which means many families manage the lives of several zebras simultaneously. Living with complex conditions such as EDS as an adult is challenging at the best of […]
Bend, But Don’t Break the Bank: Financial Resources for EDS Patients
Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissue in the body. Chronic and rare disorders often lead to medical expenses that can overburden the patients’ wallets, deplete their savings, and sometimes result in debt or bankruptcy. Patients commonly experience financial challenges due to numerous medical expenses, including diagnostic tests, […]
