Group Coaching for Ehlers-Danlos Syndrome

This trial tests group coaching to enhance participants' self-efficacy (belief in one's ability to succeed) and sense of belonging. A trained coach leads 10 sessions. The trial welcomes neurodivergent STEM students, individuals diagnosed with any form of Ehlers-Danlos Syndrome, those with spinal cord injuries, and caregivers of people with spinal cord injuries. Participants must understand English and be able to join sessions via phone or video. As an unphased trial, this study provides a unique opportunity to explore personal growth and community support.

The trial information does not specify whether you need to stop taking your current medications. It seems focused on group coaching, so it's unlikely that medication changes are required, but you should confirm with the trial organizers.

A previous study found group coaching with 8 adults who have Ehlers-Danlos Syndrome to be practical. Participants handled the sessions well, and no serious side effects occurred. This suggests that group coaching is generally safe for people with Ehlers-Danlos Syndrome. The study examined whether group coaching could help with personal goals and feelings of belonging. Participants reported no safety concerns, which is encouraging for those considering joining similar trials.¹²³⁴⁵

Researchers are excited about group coaching for Ehlers-Danlos Syndrome (EDS) because it offers a new way to address the condition's challenges. Unlike conventional treatments that focus on managing physical symptoms with medication and physical therapy, group coaching aims to improve the overall quality of life by providing emotional support and practical coping strategies. This approach fosters a sense of community and empowerment among participants, which could lead to better management of the condition's daily impacts. By enhancing mental well-being, group coaching may complement existing treatments, offering a holistic approach to EDS care.

Research has shown that group coaching can benefit people with Ehlers-Danlos Syndrome. In a small study with 8 adults, group coaching proved feasible and led to some improvements. Another study found moderate and small positive changes in certain outcomes for participants. This trial will evaluate the effectiveness of group coaching, which might boost confidence and foster a sense of community. Although more research is needed, the initial findings offer encouragement for those considering this approach.¹²³⁴⁶