I became a prenatal genetic counselor because I love babies, pregnancy, and childbirth, and I love being part of that process for people. These days I see mostly hEDS patients in my private practice, and far too often they come to me with the same concern: fear and guilt about wanting to have a baby. This is largely because of a scarcity of information on hEDS, pregnancy, and childbirth.

EDS is not a diagnosis. It is a category covering 13 genetically distinct conditions. In clinical practice, it often functions as a catch-all, applied by providers who may not know the subtypes, and held onto by patients who spent years being dismissed before getting any diagnosis at all. But an imprecise label has clinical consequences.

Flexible joints that cause pain, dislocations, or fatigue often lead to one of two labels: hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD). The two overlap so much that the line between them confuses patients and clinicians alike.

hEDS and HSD patients don't belong in the genetics clinic. That's the prevailing assumption, anyway.

At least half a million people in the U.S. have hEDS or HSD. Most are undiagnosed. Here is what that looks like in practice.

The Ehlers-Danlos syndromes (EDS) are a group of inherited conditions that affect connective tissue.