Complex Concerns of EDS Focus of Virtual ECHO Summit Opening Today

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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virtual EDS ECHO Summit

Treating comorbidities — or co-existing conditions — in people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) will be front and center at the virtual EDS ECHO Summit opening today.

The online two-day event, hosted by the Ehlers-Danlos Society, will bring together some 200 specialists worldwide to hear 23 expert lectures, as well as presentations and case reports addressing the many health concerns of people EDS and HSD — a group of disorders related to joint hypermobility. Posters will also be available for viewing.

“There is no doubt that people with EDS and HSD can have complex sets of comorbid concerns that substantially [and] negatively impact their physical and mental health and quality of life,” Alan Hakim, MD, the summit’s coordinator and leader of the society’s ECHO programs, said in a press release.

“Their assessment first requires that clinicians recognize that these concerns are real and co-exist; and that care requires a coordinated, multidisciplinary approach,” Hakim added.

The EDS ECHO Summit, which runs between the international symposiums held every three years, is designed for health and social care practitioners.

Topics that include ear, nose, and throat disorders, urological complications, neurodiversity, gastrointestinal issues, pain, psychiatric conditions, physical therapy, orthopedic surgical outcomes, and respiratory concerns will be discussed.

The summit uses the framework of Project ECHO (ECHO stands for Extension for Community Healthcare Outcomes), an online initiative to support healthcare professionals caring for EDS and HSD patients  through shared educational and telementoring networks.

According to the Ehlers-Danlos Society, “improving the quality of life …  will be echoed throughout the speakers’ presentations, with the importance of a multidisciplinary team approach when dealing with any one issue in a person with EDS and HSD.”

Summit speakers will also talk about the importance of treating each patient individually.

Vikram Khullar, MD, with St Mary’s Hospital in London and a specialist in urinary and gynecological problems secondary to EDS, noted in the release that a person may live with incontinence for about 12 years before going to a doctor.

Cathleen Raggio, MD, a specialist in pediatric orthopedic surgery at Hospital for Special Surgery in New York, is the event’s keynote speaker. Raggio will address the importance of considering whole-person care, as opposed to addressing EDS symptoms alone, to make an informed decision about orthopedic surgery. She favors surgery after clear goals are identified and all non-surgical options are exhausted.

Summit registration is open through noon ET on Saturday, Oct. 3. The event’s full agenda can be found here.