EDS Living and Education

Patients with EDS/HSD shoulder a burdensome workload living with a misunderstood condition. Typically, workloads include managing treatment plans, frequent appointments, maintaining a healthy lifestyle, and enacting self-care – in addition to usual daily roles. Education on aspects of EDS/HSD that help keep patients functioning is crucial to improve outcomes. As we know, living with and managing chronic illness is significantly dependent on the patient’s knowledge of the condition. If education is not sufficiently provided, or the workload is exceedingly taxing, this workload-capacity imbalance may negatively affect patient-centric outcomes including clinical, well-being, and quality of life.

For these reasons, we developed an education program, “EDS Living” conducted over one full day in a virtual group setting. It consists of EDS experts from various disciplines teaching multiple patients simultaneously, which in turn allows more time during face-to-face encounters for assessment at the individual level. Patients completing the education program are given the opportunity to provide feedback as we improve on the positive results of our program. Initial responses from patients have been uniformly positive. Conception of this education program derived from the volume of inbasket questions from patients as we recognized the amount of time needed to understand EDS was limited by the time available for scheduled visits. Thus, the program was launched on June 4, 2021 and has since improved the knowledge for many patients.

Until curative therapeutics are available, it is essential to create multidimensional, sustainable, and meaningful strategies for patients living with EDS/HSD. Because of this critical need, we built EDS Living to be tailored to the needs of patients as an integrated, embedded education program within the treatment resources of EDS at Mayo Clinic. As this is still new to our services at Mayo Clinic, we are mindful of the many patients who have yet to be enrolled. Please stay connected to listen out for the referral notification if this program is right for you. Some other excellent educational resources we also recommend include the Ehlers Danlos Society, the book Disjointed by Diana Jovin (editor), and of course this Blog! So, stay tuned for further updates.

Author: Dacre Knight, MD, MS