Author Archive
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. […]
Posted on September 24, 2012
Most EDSers have problems using a computer. If we work at a desk, our elbows are resting on firm plastic armrests or on a hard desk surface. Either way, we’re placing pressure on the point of our elbow for prolonged periods of time. This leaves us prone to joint pain or elbow bursitis, a painful […]
Posted on August 22, 2012
www.EDSawareness.com launched its new online resource at the EDNF Learning Conference last week in Cincinnati, Ohio. “We had an overwhelming response”, says John Ferman, Founder. “My wife passed away in 2008 – never knowing EDS was the cause of 30 years of chronic pain. This was the same year my daughter was diagnosed with […]
Posted on August 5, 2012
Kristen Means discusses her journey with EDS. 1 in 10 Americans have hypermobility connective tissue disorders, according to EDS expert, Dr. Fraser C. Henderson, Sr. MD. That’s 30 million people – and we don’t know exactly how many are afflicted with EDS. Many of them suffer daily with invisible pain and chronic fatigue. Ehlers-Danlos Syndrome […]
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