POTS, MCAS, and GI symptoms show up alongside hEDS often enough that they’re worth understanding on their own. Part 2 of this two-part series covers practical ways to manage them, what to tell your providers, and the red flags that point to something beyond hEDS.

An hEDS or HSD diagnosis answers one question but leaves the next one wide open: now what? Part 1 of this two-part series covers where to start, from physical therapy and a medication review to everyday habits, pain, fatigue, and mental health.

Private practice runs hot and cold, and the temperature changes faster than I expected.

Some weeks the calendar fills up. Referrals come in from providers who see the value in what I offer, someone shares a post, and Swan Health Genetics starts to feel like a practice instead of a plan. I catch myself thinking the hard part is behind me. Then a few weeks later, crickets. Nobody books. The emails I send to potential referral sources go nowhere, and calls don't get returned. Patients no-show without ever saying why.

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.