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Frequently Asked Questions

What type of Doctor to see for EDS?

Most medical doctors should be able to diagnose EDS and HSD. However, because the Ehlers-Danlos syndromes are genetic disorders, primary care physicians often provide their patients with referrals to a geneticist.

How to get diagnosed with EDS?

To get an Ehlers-Danlos syndrome (EDS) diagnosis, your doctor will review your medical and family history, perform a physical examination and in some cases will order genetic testing. Of the 13 EDS subtypes, 12 can be confirmed with genetic testing.

What is the blood test for EDS?

Your doctor may also suggest a: Blood test to look at your genes and make sure EDS, and not some other disease, is causing your symptoms. Heart ultrasound (echocardiogram) to look for heart problems common to some types of EDS. Skin biopsy to take a small sample and check the collagen for signs of the syndrome.

How do you test for EDS syndrome?

Doctors may use a series of tests to diagnose EDS (except for hEDS), or rule out other similar conditions. These tests include genetic tests, skin biopsy, and echocardiogram. An echocardiogram uses sound waves to create moving images of the heart. This will show the doctor if there are any abnormalities present.

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