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Should I Get Tested For Eds?

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I know that EDS is genetic, and as far as I know, none of my blood relatives have been diagnosed, or are even that hyperflexable (I have a niece who has 2/9 of the Beighton score). However, I have suspected for the past year or so I might have EDS... Though my skin isn't excessivly flexable, I do have all 9 of the Beighton score, and since I've been diagnosed with POTS (I can't quite remember when I started having symptoms, but I can't quite remember when I didn't have symptoms), I have decided that perhaps I need to follow up on the EDS. Is it worth a shot being tested for it? What does a test for EDS entail?

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If you think that you meet all 9 of the Beighton criteria then you definately need to be evaluated for EDS. There isn't a specific test for EDS (some of the types such as vascular EDS they can look for the gene on a blood test, but a negative test doesn't mean that you don't have EDS). For most people an EDS diagnosis is based on your history of symptoms and a clinical examination. There are a set of criteria called the Brighton criteria (they include the similarly named Beighton criteria) that guide a doctor to diagnose hypermobile EDS. (Prof Rodney Grahame an EDS expert who diagnosed me says that the "Joint Hypermobility Syndrome" is the same as "Hypermobile EDS".

In the UK you would need to see a rheumatologist that is knowledgable about EDS. In the USA most people seem to be diagnosed by geneticists.


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