Life used to feel so normal. I was a ballerina, a ballroom dancer, played the piano, ran track and field, rode my bike endlessly, and even competed in a dart league—winning first place in provincials. I spent countless hours racing my brother on our scooters, laughing and pushing each other to go faster. My life was full of movement, joy, and activity.
Then, one June, six years ago, I woke up with a sore knee. At first, it seemed like nothing—just a minor ache. After all, I was active, and a little soreness was normal. But over time, the pain became unbearable, spreading to other joints. By the following January, my life had completely changed. I was enduring painful weekly injections for Juvenile Arthritis, struggling with daily pain in at least five major joints, traveling out of town for endless doctor appointments, and watching what I knew as “normal life” quickly slip away.
Over the last four years, I’ve spent about eleven weeks in the hospital, endured countless diagnostic tests, multiple ambulance rides, three PICC lines, two port-a-caths, and continuous IV infusions. Today, I take over thirty pills a day—not including the IV treatments—and have collected over 1,000 “beads of courage,” each representing a test, procedure, poke, day in the hospital, ambulance ride, and so much more.
At first, it all happened so fast that I was too overwhelmed to be scared. Mostly, I was confused. What began with a sore knee quickly grew into a cascade of medical challenges. I developed two heart conditions, severe gastrointestinal issues that required IV nutrition because I couldn’t eat, intense joint pain, and a constant reliance on an IV pole. My daily life became full of stability aids—wrist braces, leg braces, a cane, a wheelchair for long distances, a stair lift to reach my bedroom, and various tools to help with basic activities like bathing.
On top of that, I have severe scoliosis that worsens every day, causing my rib cage to twist and my spine to press on my lungs and organs. I am in need of a spinal fusion from my neck to my tailbone, involving rods, screws, and cadaver bone, but that surgery is on hold until I am stable enough to handle it safely.
In November 2016, while talking to my mom, my left shoulder dislocated. She was mortified, but I simply popped it back in—though it hurt badly. Nearly three years later, dislocations became a daily reality. I now experience around twenty dislocations every day, affecting my jaw, hips, knees, ankles, ribs, shoulders, and neck. My neck required a brace for an entire year. Sometimes, I’ll stand up and my knee will slip out of place. I laugh, my ribs subluxate, my jaw clicks as it falls out of position, and my hips—my worst joints—dislocate constantly.
After four long years of searching for answers, we finally discovered the cause of these mysterious health issues: Ehlers-Danlos Syndrome. The very “party tricks” I used to gross out my friends—being hypermobile or “double-jointed”—turned out to be a key clue. My first orthopedic surgeon told me there were only two reasons someone would dislocate so frequently: an injury or EDS. Clearly, it was EDS. My history and symptoms matched the syndrome perfectly.
Researching EDS left me in awe. I realized I am, in many ways, the poster child for the syndrome. While the diagnosis itself wasn’t easy, it finally gave me answers. I know some might think I should hate EDS or be angry at the world—but the hardest part has been the doubt from others. Early on, I was told nothing was wrong, that it was “all in my head,” a cruel reality many with EDS face. Those moments—when my pain was questioned—were some of the most isolating and painful of my journey.
The past nine months alone have been intense. I underwent surgery for a suprapubic catheter after my bladder suddenly stopped working—a mental and emotional challenge like no other. I received IV muscle relaxers every four hours around the clock for four months, had my third PICC line placed, and underwent surgery to remove and replace my port-a-cath. I traveled to multiple cities for appointments, countless admissions, and multiple sedations for procedures, all while being poked, prodded, and tested more than most people can imagine.
Today, with better understanding and education about my diagnoses, life looks different but still demanding. I rely on my amazing mom to help with daily necessities like bathing and dressing. I receive saline infusions every second day for POTS through my port. The suprapubic catheter has been removed, which was something we weren’t sure would ever be possible, allowing me to stop the IV muscle relaxers. I still experience many dislocations each day and take over thirty pills daily. Pain is constant, and I use a walker and wheelchair, among other aids.
School isn’t traditional for me, but I homeschool myself, taking advanced courses as my pain allows, even on holidays. Our life revolves around medical care, traveling for infusions, surgeries, and appointments. In my free time, I enjoy calligraphy, art, gardening, and watching medical documentaries—a little unusual, I know, but I love learning about the human body. Ever since I could speak, I’ve wanted to be a baby doctor. Even before my own health struggles, that dream was my goal. EDS may slow me down, but it will never stop me from becoming a neonatologist.
Now, at sixteen, I am proud to serve as an Ambassador for Fight Like a Warrior, an organization that empowers those with chronic illnesses, and for Easter Seals, which provides programs and financial support to help children with disabilities gain independence and accessibility. This is only the beginning of my journey to raise awareness, inspire others, and share my story.
