Tag Archives: Diagnosis

The epidemic of “It’s all in your head”

And how things are going to get difficult for EDS people in 2018. Advertisements

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Link: EDS, Hypermobility Type: Evolving Perspectives on a Poorly Understood Problem – Dr. Derek Neilson

“EDS, Hypermobility Type: Evolving Perspectives on a Poorly Understood Problem” is an informative talk by Dr. Neilson that touches on many important issues related to EDS-HT as well as  presents some very important updates regarding this condition that I have … Continue reading

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What makes a seemingly well person with Joint Hypermobility Syndrome so sick?

“Ehlers-Danlos Syndrome: A Multi-dimensional Disorder” by Dr. Clair A. FrancomanoA very informative talk on all the things that go wrong in the body of a person with Joint Hypermobility Syndrome (JHS, aka EDS-HT). A rather comprehensive talk of 37 minutes, … Continue reading

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Link: NY Times readers solve a mystery

 Hurting all over  (Think like a doctor, the diagnosis column of the NY Times Magazine)

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Marfanoid Habitus: My long arms of law

You won’t see it unless you look for it. True for most of the subtle signs of hypermobility syndrome (EDS-HT).An important sign is a mild expression of marfanoid body type, one of the features that EDS-HT shares with other hereditary … Continue reading

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Is Ehlers-Danlos Syndrome rare – or just rarely diagnosed?

Is Ehlers-Danlos Syndrome rare – or just rarely diagnosed?  I read an article by  Jan Groh, EDS patient & support group leader at http://www.chronicpainpartners.com/what-is-eds/ An excerpt: Only 5% of Ehlers-Danlos Syndrome (EDS) sufferers are correctly diagnosed*.  It’s been estimated that EDS … Continue reading

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How long is your X-file of diagnoses?

  See the full presentation here “Crushing”  “Depressing”  “Devastating”  “Dispiriting”  “Demoralizing”  People who have been diagnosed with hypermobility syndrome will use these words to describe the pre-diagnosis period. I have seen the incomprehension and incredulity in the eyes of friends, heard … Continue reading

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