Dealing with EDS
Author Jessica MacLean on how writing saved her and what she learned from her ancestors
For January’s Chronic Pain Partners post (our monthly newsletter), journalist Karina Sturm spoke with author and fellow EDS warrior, Jessica MacLean. Despite never being able to hold a pencil correctly, MacLean was first published during high school, and she became a writer. The Arizona native’s recently published book, Arizona Rain, tells the stories of her […]
The Road to Recovery Was Paved By Me and My Wheelchair: Q&A With Ryann Mason
Many people with chronic illnesses, like Ehlers-Danlos syndrome (EDS) or other disabling or deteriorating conditions, are often afraid of the possibility of “ending up in a wheelchair.” It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren’t the end, but empowering and enabling for the user. And sometimes, […]
The 12 Gifts of Blissmas: This Holiday Season’s Gift Guide for the EDS Warrior
Let’s be blunt: chronic illness and pain sucks. Many of us don’t only live with Ehlers-Danlos Syndrome (EDS), but also have a variety of comorbid conditions such as postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS), affectionately known as the EDS trifecta. Living with all of these takes ‘chronic illness and pain’ […]
EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations
This time of year, it can be hard for anyone, especially those with a chronic illness like Ehlers-Danlos syndrome (EDS), to gear up for the holiday madness. The pressure to shop, cook, wine, dine and be fine is too much! You might not be able to travel or gather with loved ones for various reasons, […]
Interview with Dr. Linda Bluestein about her new educational program for people with EDS
Doctor & patient communication
Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!
Vascular Ehlers-Danlos condition is an inherited connective tissue problem that is brought about by deficiencies in a protein called collagen. It is viewed as the most extreme type of Ehlers-Danlos disorder (EDS). Common symptoms incorporate thin, transparent skin; bruising; specified facial appearance; and fragile arteries, muscles, and inside organs. Vascular EDS is generally caused by […]
Discovery Health Channel: Ehlers-Danlos Syndrome
Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face. It addresses EDS Hypermobility and Vascular types.
Explaining Disability-Part of What Makes Us Disabled
Author: Jonathan RodisPresident-Massachusetts Chapter of the National Marfan FoundationHead-EDS Massachusetts and New England Support Group “I wanted to share with you something I wrote to help everyone understand what it is like to be disabled, what it is like to have an invisible disability, what to do if you find yourself trying to explain your […]
