If this invisible illness
isn’t rare, the question
is are we doing
ourselves a disservice
when we say it is?
Not according to one internationally respected EDS specialist and his fellow authors. And, if this invisible illness isn’t rare, the question is are we doing ourselves a disservice when we say it is?
Common Confusion
Written in 2014 by a group of known experts including Professors Grahame and Aziz, and Dr Hakim,
A Prospective
Evaluation of Undiagnosed Joint Hypermobility Syndrome in Patients With Gastrointestinal Symptoms,
(Grahame, Hakim, Aziz, et al.) opens with a short paragraph introducing Ehlers-Danlos. In it is:
It's important to keep in mind that when asked about the two terms, world renowned Professor Grahame, who was one of the first two people to draw the link between EDS and Dysautonomia, said EDS and Joint Hypermobility Syndrome (JHS/HMS) are the same thing, and that the JHS/HMS term will one day cease to be used. In the study, the experts use the two terms interchangeably.
In Europe, raredisease.org states a medical condition must affect no more than 1 in 10,000 people to be classified as rare.
However,
EURODIS, the 'Big Cheese' of rare disease this side of the pond, says no more than
1:2000 is the ceiling.
Down Under, The Australian Therapeutic Goods Authority use the same figure.
In America, the National Institute of Health (NIH) say the limit sits at no more than 200,000 people in the entire US population (of 318.9 million) being affected, while it’s 50,000 in the UK.
That’s confusingly variable.
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