Saturday, August 29, 2009

Welcome to my little alcove somewhere in a corner of the vast internet

I've avoided creating a blog detailing my life with Ehlers, because I didn't want it to define me.
However, I now understand that there is no denying such a huge part of my life. I believe an introduction is at hand.

My name is Jessica, and I was born some 20 years ago in South Dakota.
From the time I was young, my mother noticed some things about me that didn't seem quite right. I was late to walk, often sick, and complained of pain. At that time, we were poor, and had no insurance. The doctors, for years, said there was nothing wrong with me.

As time went on and I got older, school started becoming more and more difficult. The school insisted I had a learning disability, however the reality was that I was in pain. Seeing as I had no medical diagnosis, I was labeled as having behavior issues. The pain continued, some of my joints would spontaneously dislocate, and I continued to see doctors about it. They were rather arrogant, uncaring, telling me it was all in my head. I was quite sure it wasn't.

Finally, when I was 15 years old, an orthopedist noticed something odd as he examined me, and referred me to a geneticist. That gave me hope, that maybe someone would finally figure out what was wrong with me. At age sixteen, I saw that geneticist. She examined me, had me perform several tasks and movements. When she was finished, she gave me the answer I'd been waiting for; it wasn't all in my head. I had Ehlers-Danlos Syndrome, type 3. She explained to me that the collagen in my body was defective, and that's what was causing my pain and dislocations.

In the years after my diagnosis, I saw many more doctors. Some understanding, some still ignorant. I've been "fired" by doctors, because they had exhausted treatment options and could not help me. I've been diagnosed with other secondary conditions as well. Aside from the Ehlers, I have scoliosis, a flared ribcage, arthritis, TMJ, tibial torsion, planovalgus foot deformity, the last two corrected through surgery, however, this isn't a full list.

My day to day life is painful, but I keep going, because I'm not going to let this take me down.
This is me, take it or leave it.

1 comment:

  1. Welcome to the blog world!

    I'm glad you feel you can share your story with the world.