May Is Ehlers-Danlos Syndrome Awareness Month

art by Lora Mathis

May Is Ehlers-Danlos Syndrome Awareness Month.

No other disease in the history of medicine has been neglected in such a way.
--Dr. Rodney Grahame

I cannot think of a single illness that needs more awareness than EDS. It is not taught in medical school; most doctors have never heard of it. 

EDS is a genetic disorder that causes defective connective tissue. I was born with it, and started showing what would later be recognized as symptoms very young. 

I was not diagnosed until just before my 30th birthday.

In the intervening time, I was blamed for my illness. I was told by an allergist that I was making it up, that I was "doing it for attention". I was told by an emergency room doctor that "women just have pain sometimes." I was told by a neurologist that I was "performing illness" to cope with some suppressed childhood trauma. I was told that what I was experiencing was not real. 

My experience is not uncommon. The average time to diagnosis for people with EDS is ten years. Most of those people are women.

For you and your loved ones--because you likely know somebody who has EDS and does not yet know--just learn the basics.

I've written a little about the experience of living with EDS and its comorbidities in Pacific Standard, Luna Luna, and Quail Bell magazines.

This website is for my writing. But at times, my illness makes it difficult and even impossible to write, and I wanted you to know why.

1 comment:

Cristy Godin said...

Your story is so similar to mine and many other EDS sufferers. Don't let the doctors push you around. Stand your ground.

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