Archive for the ‘Community’ Category
Posted on June 23, 2023
As discussed in the previous articles in this series, attending school with Ehlers-Danlos Syndrome (EDS) can be extremely difficult but possible with creative adaptations. Sometimes, however, accommodations aren’t enough, and formal education is impossible. The United States has compulsory school attendance laws, which vary significantly by state, but all take the truancy of school-aged children […]
Posted on June 22, 2023
In May, we published an article about a new children’s book about EDS, invisible illness, and disability–Bendy Bones and Stretchy Skin: An EDS Story. In this book, a young girl named Abigail struggles with her Ehlers-Danlos Syndrome and the effect it has on her life. Some of Abigail’s friends and classmates don’t understand why she […]
Posted on June 5, 2023
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 […]
Posted on May 13, 2023
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, […]
Posted on April 28, 2023
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. […]
Posted on April 26, 2023
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 […]
Posted on April 23, 2023
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, […]
Posted on April 1, 2023
In last month’s article, “4 Tips on How To Navigate School as a Student with Ehlers-Danlos Syndrome,” we took a very subjective look at the issue of attending high school while living with Ehlers-Danlos syndrome. This month, we wanted to hear from two teens navigating the school system with EDS, Amicie Koslow and Lily Hirschson. […]
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