Changes in Pain and Other Symptoms of Ehlers-Danlos Syndromes Over Time

PRINCIPAL INVESTIGATOR: Jane R. Schubart PhD, Susan Mills MPH RN, Heather Stuckey-Peyrot DrPH (Penn State College of Medicine)

PROJECT GOAL:  Describe the trajectory in EDS symptoms experienced in a cohort of individuals over a decade, and the factors that contributed to their ability to adapt to changing health.

STUDY TYPE: Qualitative study (semi-structured interviews) of 28 EDS patients 

STATUS: Completed.

SUMMARY:  This qualitative study is the third study in an ongoing series of research of an EDS patient cohort and builds on a prior study of longitudinal symptom data in the EDS population. Members of this cohort have been tracked for over a decade and the patients are providing rich data for our investigators. This previous study was the first to report a decade of longitudinal data in EDS. The goal of the present study is to expand on this research by increasing our understanding of the trajectory in symptoms of EDS. A manuscript has been accepted for publication.