One of those things that turned out to be an EDS thingPosted January 28, 2021
When I sit, invariably I cross my ankles and they relax into this position. Sadly, this also means they give whenever they feel like it. My story is not uncommon in that things I can do, I thought were fairly ‘normal’, have apparently turned out to be ‘EDS-things’; such as my ankles relaxing up to a 90-degree angle.
I have had issues all of my life but saw so many different specialists (orthopedic, OBGYN, audiologists, ENT, cardiologist, and more) that I was considered to be accident-prone or an exaggerator, until I had a genetic test that led to my actual diagnosis at age 48. While I am grateful I now know the cause, it has opened up a whole new round of doctor visits and diagnoses as they explore all the things connected to EDS. Things that had remained undiagnosed: Mast Cell Activation Syndrome, orthostatic intolerance, skin sensitivities, medication reactions, auto-immune arthritis, and more.
I am the first person in my family to be diagnosed, but by just looking at and knowing what some of my extended family can do, I doubt I am the only one. Sadly, I think the fear of being labeled with something rare has kept all but one from exploring their own genetics for a diagnosis.Tags: Diagnosis Journey, family, hypermobility, mast cell
Categorized in: Stories