Posts Tagged ‘Dealing with EDS’
Posted on November 22, 2022
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’ […]
Posted on November 21, 2022
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, […]
Posted on March 24, 2022
Doctor & patient communication
Posted on November 29, 2021
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 […]
Posted on November 1, 2013
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.
Posted on January 17, 2013
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 […]
Posted on July 14, 2012
EDSers are often frustrated with kitchen implements – they may be ineffective, difficult to use, or downright painful! Opening jars, bottles and cans are high on the list of complaints. Slicing, peeling, and cutting with knives is often painful. Lifting heavy pots, especially those with long handles, create torque on the wrist that makes it […]
Posted on June 12, 2012
Sometimes when I am in pain with EDS, I need to sleep on my side. In the past this has been very difficult because I toss and turn until I get the blanket correctly positioned between my knees. This drives me nuts, and I end up moving around in bed to try to get comfortable. Most of […]
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