Posted July 2, 2018

by Samantha G.

I have been in pain my entire life, but until February 14, 2016, I thought that this is how I was supposed to feel. My dad is in the military, so I did not have the luxury of one doctor monitoring my progress as I grew. My doctors told me I had growing pains until I was 15, never doing any tests to try and find a more definitive answer. When I dislocated my kneecap while walking on flat ground, I thought I might get some answers but all I got was a fancy new knee immobilizer to add to my collection of braces. It wasn’t until I fell ill with Median Arcuate Ligament Syndrome(MALS) that my doctor started really looking at my condition. A plethora of tests, doctors visits and medications later, I had surgery on the books to repair my MALS and an appointment with a geneticist to confirm my EDS diagnosis on February 14th, 2016.

The diagnosis came in the spring of my junior year, and the surgery in the summer. During this period I was unable to eat more than absolutely necessary and I lost 20 pounds. Malnourishment and dehydration exasperated my joint pain and put me in the ER twice. Nevertheless, I put every ounce of energy I could muster into my school work, and I got a perfect score on my Advanced Placement United States History (APUSH) exam. A year later, with a few more AP exams and diagnosis under my belt, I limped across the stage and graduated high school with a 4.1 GPA.

Today, I am an 18-year-old full-time college student and part-time Petsmart employee. I take 15 credit hours a week, work at least 20, and spend the rest of my time recovering and studying. I refuse to let my condition hold me back, even when the bad days make going on seem like the hardest thing I could do.

I find strength in my diagnosis, knowing that other people struggle with the same things I do every day, but I can do it with half the energy and twice the pain.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

Do you have a story to tell? Share it with us!

Tags: ,

Categorized in: