Parenting children with Ehlers-Danlos syndromes — or EDS — is a sport on its own. From the moment my children were born, I knew something wasn’t right. They were symptomatic from birth, but for years, doctors couldn’t figure out what was going on. And even when we finally found answers, the hardest battles weren’t against […]
Cerebral venous outflow disorders describes a spectrum of conditions related to issues with how fluid drains from the brain.Experts are observing a connection between connective tissue disorders (like hypermobile EDS) and cerebral venous outflow disorders. Cerebral venous outflow disorders can cause pressure headaches (that often worsen when lying flat), dizziness, pulsatile tinnitus (a rare vascular form of tinnitus), neck pain, tenderness at the base of skull, vision disturbances, ‘brain fog’, and cognitive dysfunction. Cerebral venous outflow disorder may look different when it presents in individuals with connective tissue disorders than in individuals without, creating diagnostic challenges.
Guest post by Jon Rodis, President of the Connective Tissue Coalition Finding respectful, knowledgeable care can be difficult, especially for those living with complex or chronic conditions. After years of what I call “the doctor shuffle,” I discovered strategies that helped me strengthen my care and build a supportive medical team. Here are the […]
You hear a cat meowing as you walk past your neighbor’s apartment. Your lease says you can’t have any animals—she’s going to be in big trouble if the property manager finds out. You visit your grandmother in the rehab hospital, and she’s holding a bunny rabbit and smiling widely. At dinner that night with your […]
Welcome back to Research Round-Up. This time, we’re looking at research that focuses on Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in the young ‘uns, from birth to age 18. While some of the effects of EDS can be the same on adults as on the little ones, sometimes, the kiddos have more to […]
Life with chronic illness rarely comes with downtime—or at least, not the kind we choose. For those living with Ehlers-Danlos syndrome (EDS), ME/CFS, lupus, fibromyalgia, autoimmune diseases, or any other related condition that affects your spoons, rest is often a necessity. Author and artist Jules Machias, who lives with EDS, knows this firsthand. Their new […]
A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many […]
20 free reasons plus two more at no extra charge! May is designated as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. Throughout the month, there are fun ways to show your stripes and help raise awareness of these often-overlooked conditions. Check out some of the ways below that you can help strengthen […]
Ehlers-Danlos Syndrome May Increase Susceptibility to Infections
EDS, POTS and MCAS Linked by One Gene Mutation
Popular People With Ehlers-Danlos Syndrome
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”