Archive for the ‘Pacing Techniques’ Category

Being Your Own Advocate

Posted on February 22, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group “ 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 […]

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Dana Describes Her Journey with POTS

Posted on January 26, 2013

Hello everyone! My name is Dana and I suffer from POTS (Postural Tachycardia Syndrome). I decided to create this channel to reach out to others who have this disorder too. About me: I have had POTS since I was 16 years old. I am now 28. (Had a birthday in April) I tend to have […]

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Explaining Disability​ – Part of What Makes Us Disabled

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 […]

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Fight to be Upright! Charlie’s Campaign for Lifesaving Surgery

Posted on January 22, 2013

Charlie needs a life saving surgery in Maryland.  Many fund raising activities are raising the money needed. Charlie’s Battle with Ehlers-Danlos Syndrome, Cranio-Cervical Instability, and Chiari Malformation. Charlie was born with Ehlers-Danlos Syndrome (EDS), a genetic disorder he inherited from his mother, Christine. Individuals with EDS have a defect in their collagen, the main component […]

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“No Matter What’s Going on With My Brain There’s Always Music in My Head.”

Posted on January 18, 2013

The Bellmawr resident writes edgy, melodic rock songs with titles like “Palinopsia,” the name for an optical disturbance that’s among the debilitating symptoms of Ehlers-Danlos Syndrome.About four years ago, Fatale was diagnosed with the connective-tissue disease, which creates havoc in the joints, spine, and elsewhere. After surgeries left her barely able to move her head, […]

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This Young Woman Dislocates Her Shoulder Up to 10 Times a Day By Just Sneezing!

Posted on January 1, 2013

Lauren has not been diagnosed with EDS yet. But she has many of the symtoms.  Trying to work with this disorder can be difficult. “- This Genetic condition means  Lauren’s collagen is too weak to support her joints – She goes to work  at McDonalds even when she is in pain – Doctors dislocated Lauren’s […]

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If Your Child Moans About Sore Legs Dont Assume They’re Just Lazy

Posted on December 30, 2012

Merrily had problems with her joints.  She was eventually diagnosed with Hypermobility, a form of Ehlers-Danlos Syndrome. When Merrily, my ten-year-old daughter, complained this summer that the sole of her left foot was sore, I was surprised to find a large lump in the arch. Our GP put it down to ill-fitting shoes (she lived […]

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Practical Parenting Tips for those with Physical Limitations

Posted on September 20, 2012

by Jennie Macdonald  As someone who suffers from two chronic illnesses (Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) that include fatigue and joint pain as my two major limitations, I understood the extreme need to be efficient with my time and energy in my early years of parenting. For me, a main priority was to […]

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