Tag Archives: Doctors

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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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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Rare Disease Day 2016

Today is Rare Disease Day. Rare diseases are defined by most organizations as those diseases that have a low prevalence. While EDS-HT is considered a rare disease, there are many recent studies that suggest a higher prevalence of this condition and … Continue reading

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Reblog: Something to think about

“A good doctor isn’t the one who knows more, who has read every medical paper ever written some or has an arms length of initials, after their name. Without a doubt, knowledge means a lot, but it makes them knowledgeable, … Continue reading

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Continuing Medical Education (CME) in Humility and Healing

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all – the apathy of human beings.” ― Helen Keller My thoughts related to my invisible illness often revolve around … Continue reading

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A Letter to Patients with Chronic Disease – Dr. Rob Lamberts

A very interesting post written by Dr. Rob Lamberts in his blog Musings of a distractible mind, which has generated a lot of discussion around the web, as well as personal and touching stories shared by readers in comments. A … Continue reading

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5 TOP TIPS FOR DOCTORS AND THERAPISTS WORKING WITH CHILDREN WITH RARE CONDITIONS [LINK]

A well written post by Sarah at her blog, My Stripy Life.Read here.

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The case for renaming Hypermobility Syndrome

Hypermobility of joints (JHM) is not a disease. It is a feature of joints in which the range of movement at the joint is more than expected or normal. It can arise from many factors, genetic and acquired. What is … 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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