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.

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.

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.