The centrality of healthcare and education interactions – An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a rare group of connective tissue disorders and, as such, the diagnosis can often be delayed. While emerging research indicates that there may be adverse psychosocial consequences for the child, little is known about the processes behind such outcomes, including the psychosocial impact of this rare disease on family life.