Face #2: Erica

Erica, what’s your diagnosis?

Hypermobile Ehlers-Danlos Syndrome, with Dysautonomia, Gastric Dysmotility and hearing loss.

How old were you when you started showing symptoms?

I started having knee pain as young as eight years of age.

And how old were you when you got an official diagnosis?


Are you able to work? If so, what do you do?

I work full time as a nurse. It is difficult but I need to keep my health insurance, and it’s a nice way to stay active.

Have you had to give up on any career dreams?

I originally dreamed of working in a hospital in a NICU, but once I got diagnosed my physical therapist said I need to be realistic about how long my body will last. Anything straining will just decrease the years I can work, so I’m working but also trying to choose where to limit the strain on my body.

How many health professionals are on your team?

I have 5:

Physical therapy
Interventional radiology

Which of those health professionals is your “go-to” person when you have questions, or things are going pear-shaped?

My Gastroenterologist is kind if leading the team right now because I am having such serious problems.

What’s the most problematic symptom of your hypermobility condition?

At the moment my gastric dysmotility is completely out of control; my joints while they hurt and sublux, are being put on the back burner while we try and get this under control.

Have you had bad experiences with ignorant health professionals? Can you tell us about one of those experiences?

Yes, getting diagnosed. A rheumatologist told me I was hypermobile, so I read about it and saw a lot about Ehlers-Danlos Syndrome, I asked him more about it, and he laughed and said I don’t have that it’s too rare but if I wanted to waste time he gave me the name of a specialist. Six months later I had an appropriate hEDS diagnosis.

What’s the one thing you want the world to know about hypermobility?

It hurts. It’s not just being stretchy; even though your joints move too much, it actually feels like you are stiff. Your muscles are constantly in a spasm to try to hold your joints together.

Why is getting the message out about hypermobility so crucial?

It is not understood. There are so many people on this road that it should be a more understood and accepted medical condition. We need help and education to come up with better medical management.

Are there/have there been any plus sides/benefits to having your hypermobility condition?

I have learned to write as a form of expression, and I have made so many friends. I belong to a community I wouldn’t even know about if it wasn’t for EDS.