Articles
Posted on April 13, 2013
Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs. At times we need a little humor! Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone. Click […]
Posted on April 5, 2013
By Sandra Strege-Mims Barr, PhD. Sandra Leads the Ehlers-Danlos Syndrome Local Support Group in Dallas, TX. We will be looking today at the impact that a diagnosis of Ehlers-Danlos Syndrome has on a couple or a family. Most families proceed through day after day earning money from one or two incomes, using that money to […]
Posted on February 22, 2013
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-EDS Massachusetts and New England Support Group “Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor? Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]
Posted on January 23, 2013
Author: Jonathan Rodis President-Massachusetts Chapter of the National Marfan Foundation Head-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 […]
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 December 7, 2012
A face-cradle style pillow with airflow channels $28.95 EDSer Comments: – I turned my bed into a massage table by using this pillow as a face cradle. The hypermobility in my neck prevents me from laying with my head to the side. I like how this pillow holds my head straight, and I can […]
Posted on December 7, 2012
Cart for grocery shopping, laundry and easy-carrying $49-55 (See photos below) EDSer comments: – My physical therapist told me to avoid torque on my hypermobile joints. When I described the wrist and shoulder pain I have when grocery shopping, he said that steering the grocery shopping cart was a big contributor. I thought it was only from […]
Posted on December 1, 2012
The Beautiful Splint Company in York, UK makes medical jewellery for people who need specific support for their joints, for instance due to arthritis. This film follows Emma, an artist who has Ring Splints made for her fingers due to hypermobility caused by Ehlers-Danlos Syndrome, which has also resulted in arthritis in her finger joints. […]
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