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Have you ever wondered what the typical EDS patient looks like?
As a benefit to the Ehlers Danlos Syndrome care at Mayo Clinic, patient care is integrated with research conducted on site. In this model, physicians work together with basic science researchers to promote advances in understanding EDS and translate knowledge to clinical practice. At the one-year anniversary of the EDS Clinic in Jacksonville, 471 patients have completed full assessments (436 females, and 35 males); 92% were women with the majority being under the age of 50. Of females, 285 were under the age of 50, and 33 were over the age of 50. There were 19 males under the age of 50, and 4 males over the age of 50.
Several families have been identified where multiple family members have been diagnosed with hEDS. Of the 471 patients seen at the EDS Clinic, 72.4% have completed intake questionnaires. Most EDS Clinic participants have consented to provide research samples (370 or 78.6% of subjects, 344 females and 26 males). 29 E-Consults were scheduled for a Geneticist to review, report and provide recommendations on genetic testing results. 12 patients with positive genetic testing results required genetic follow-up with a referral to a Clinical Geneticist.
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HEDS definitely runs in my family. My mother, maternal grandmother, uncle, cousin had it, and one of my daughters also has it, in addition to myself, of course. I'm the only one who had the benefit of a full assessment, but their symptoms were/are very similar to mine.