Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspective.

ABSTRACT:

Background

Diagnosing Ehlers-Danlos syndromes (EDS) and EDS-related "hypermobility spectrum disorder" (HSD) is challenging and cutaneous manifestations often serve as indicators of these rare connective tissue disorders. Only limited data exist on the healthcare of EDS/HSD in Germany as specialized services have been missing and a national register is not available.

Objectives

In 2020, a dermatologic-orthopedic EDS outpatient service was initiated at the University Hospital of Cologne, Germany. The objectives of the present survey were to examine the "medical journey" and the disease burden of our patients.

Methods

A pseudonymized paper survey was sent to all adults who were diagnosed with hypermobile EDS (hEDS), classical EDS (cEDS), classical-like EDS (clEDS) or gen

SUBMITTER: Rauterberg J 

PROVIDER: S-EPMC12358066 | biostudies-literature | 2025 Aug

REPOSITORIES: biostudies-literature