Posts Tagged ‘Dealing with EDS’
Posted on August 21, 2023
When it comes to health crises, only a few diagnoses can be as daunting as Ehlers-Danlos syndrome (EDS). But you know what they say, “When life gives you lemons, make lemonade” – or, in this case, when life gives you chronic pain and mobility issues, make jokes (if you can)! Before we dive into the […]
Posted on August 20, 2023
[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]
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, […]
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
Many of us can often feel like we are ‘professional patients’ managing our care as a seemingly never-ending full-time job of its own. But for a moment, try picturing yourself as a first-year medical student. What tactics can you imagine you might need to learn to keep the volumes of scientific and medical data organized […]
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 15, 2023
“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 […]
Posted on June 14, 2023
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, […]