Posts Tagged ‘Dealing with EDS’

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Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!

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 […]

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Discovery Health Channel: Ehlers-Danlos Syndrome

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.

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Explaining Disability​-Part of What Makes Us Disabled

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 […]

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Reducing Pain and Effort in the Kitchen

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 […]

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Side-Sleepers Need Knee Support

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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What I use to Rest and Sleep

Posted on June 10, 2012

  Having EDS … it is often very difficult to get comfortable.  I find that this multi-postition back support system helps me rest and sleep. I can use it on the floor or in bed. I can position the wedges the way I want them and get support where I need it. This set is made up of three […]

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Do You Need Good Wrist Support?

Posted on June 5, 2012

Wrist instability is a very common problem for EDSers. I need support while I’m using my computer or driving long distances.  Stabilizing my wrist can prevent dislocations from lifting or carrying items.  Bracing reduces pressure on my wrist when I experience “torque” – a result of sideways or twisting movements.  Keeping my wrist in a straight and still […]

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