Posts Tagged ‘Kids with Ehlers-Danlos’

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New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations

Posted on June 24, 2023

[CW: Suicide] Netflix has just released the highly anticipated documentary, “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]

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When Formal Education with Ehlers-Danlos Syndrome Isn’t Possible: 3 Tips

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 […]

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Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book

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 […]

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Pey Carter and Daughter Abigail Speak About Their EDS Children’s Book 

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. […]

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Zebra Mamas: Parenting a Child With EDS

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 […]

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Two Students Share How They Navigate School With EDS

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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Kimby Maxson And The Bendy Twisty Zebra: The Story Behind The Book

Posted on March 29, 2023

The story of Rose, a young girl zebra, is the heart of Kimby Maxson’s children’s book The Bendy Twisty Zebra. Rose, her friends, and the book’s encouraging message are all based on Kimby’s real-life experiences navigating the world of doctors, hospitals, and diagnoses for her daughter, Jade. Kimby, a massage therapist and bodywork specialist from […]

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Parental Preparation for Securing Accommodations at K-12 School for Children with the Ehlers-Danlos Syndromes

Posted on March 28, 2023

Please note: the author is based in the United States, so these are resources available in the US. Check with your school or local government education office or website for processes available in your country. The Individuals with Disabilities Education Act (IDEA) is the law in the United States that ensures every child in public […]

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