My Ehlers-Danlos Syndrome Journey
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This is my story. It’s very personal to me and incredibly difficult to share.
When I was 8 years old, I started having pain in my right knee. At the time, I was in gymnastics and dance, so my parents assumed it might be an Injury from one of those activities. They took me to a pediatric orthopedic physician to figure out what was wrong. The doctor didn’t find anything concerning and recommended rest. I stopped doing gymnastics and dance but the pain didn’t stop. So my parents scheduled another orthopedic appointment. Again, nothing was found. At this point, I had to stop all physical activity because I was in so much pain. I even started using crutches to take pressure off my right leg. My parents were confused and frustrated. One orthopedic doctor said it could be a nerve condition and prescribed medication to stop the nerves from sending pain signals to my brain. That didn’t work either the pain continued, even with the medication. Eventually, we saw another orthopedic specialist. After my appointment, the doctor called my parents that same evening and told them it was all in my head, that there was absolutely nothing physically wrong with me. I was only 9 years old. |
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Hearing that as a child was extremely hurtful. A trusted doctor dismissing my very real pain was not only devastating but confusing, it made me start to wonder if something was wrong with me just not physically. I mean, he was a doctor... and I was just a kid.
The pain was so bad it kept me from doing the things I loved. I couldn’t dance, I couldn’t do gymnastics, and I couldn’t even walk through Disney World without being in terrible pain. I didn’t understand how someone could believe this was all in my head when it was affecting my life so deeply. The pain was real and it was isolating. It pulled me away from other kids, and I started to lose confidence in myself. I put up a wall.
I used crutches on and off for four years to help manage the pain in my right knee and leg. Because there was no visible injury, both kids and adults constantly questioned why I needed them. Those years were incredibly difficult. I was doubted by doctors, adults, and even my own peers. Many classmates accused me of faking it or just trying to get attention.
I’ll never forget the day a kid in my class grabbed my crutches and lunchbox and threw them over the railing during lunch. He told me to go get them because he knew I could walk. In that moment, I felt completely alone. I was being dismissed by adults and bullied by kids, and it made me feel invisible in every way.
What kept me going through all of it was my parents. They believed me, even when others didn’t, and they never gave up on finding the answer. Their support gave me the strength to keep holding on.
The pain was so bad it kept me from doing the things I loved. I couldn’t dance, I couldn’t do gymnastics, and I couldn’t even walk through Disney World without being in terrible pain. I didn’t understand how someone could believe this was all in my head when it was affecting my life so deeply. The pain was real and it was isolating. It pulled me away from other kids, and I started to lose confidence in myself. I put up a wall.
I used crutches on and off for four years to help manage the pain in my right knee and leg. Because there was no visible injury, both kids and adults constantly questioned why I needed them. Those years were incredibly difficult. I was doubted by doctors, adults, and even my own peers. Many classmates accused me of faking it or just trying to get attention.
I’ll never forget the day a kid in my class grabbed my crutches and lunchbox and threw them over the railing during lunch. He told me to go get them because he knew I could walk. In that moment, I felt completely alone. I was being dismissed by adults and bullied by kids, and it made me feel invisible in every way.
What kept me going through all of it was my parents. They believed me, even when others didn’t, and they never gave up on finding the answer. Their support gave me the strength to keep holding on.
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A friend of my parents recommended a surgeon in Tampa who specialized in complex bone conditions. After an examination and reviewing my X-rays, this orthopedic doctor finally seemed to have answers. He explained that I had a significant internal rotation in my legs called Miserable Malalignment Syndrome, which was causing my patella to sublux (partially dislocate) and was the source of my ongoing pain.
Because I was already 12 years old, braces were no longer a viable option to correct the issue. Instead, he recommended a bilateral Osteotomy of both my femurs and tibias to realign the rotation. I was horrified but also hopeful. I finally had a diagnosis, and maybe a solution. The surgery sounded incredibly scary. It would involve surgically rotating both my femurs outward and my tibias inward to realign the gate of my legs. My parents were hesitant at first. They took their time, did extensive research, and even spoke with some of the doctor’s former patients. In the end, they felt confident that this surgery could not only correct the misalignment but finally relieve the pain I had been living with for years. My surgery took place on April 8th, 2019– a day I will never forget. I was 12 years old at the time, and the procedure I underwent was called a Femoral Tibial Bilateral Osteotomy. |
To manage the pain afterward, I was given an epidural to numb the lower half of my body.
Unfortunately, the epidural stopped working after just one day, and the pain medications that followed didn’t help. They not only failed to relieve the pain but also caused severe side effects. The pain was overwhelming. I ended up staying in the hospital for seven days, even though I was originally expected to stay no more than three.
Recovery was incredibly difficult. I had to wear straight leg casts for 12 weeks, and once they were removed, it took six months before I could walk again and nearly a year before I could walk without assistance. I had been told that recovery would take about three months after the casts came off, but that wasn't my reality. My healing process was much longer and far more challenging than expected.
Those months were the hardest I’ve ever faced physically and mentally.
Unfortunately, even after recovering from surgery, my pain persisted and began to spread to other joints. At that point, my mom decided to take me to a geneticist in North Florida who specialized in rare genetic conditions. The waiting period to see him was long; three months, but we were hopeful for answers.
When we finally met with him, he spoke with me and my parents at length about my pain, my surgery, and the unusually long and difficult recovery. After a full evaluation and several rounds of genetic testing, he gave us the diagnosis: Ehlers-Danlos Syndrome a rare genetic condition.
Suddenly, everything started to make sense. The chronic joint pain, the internal rotation in my legs, my sensitivity and reactions to medications, the ease with which I bruise, the frequent partial dislocations of my knees, and my prolonged healing time, they were all connected. It was a relief to finally understand what was happening to my body. But at the same time, it was heartbreaking to learn that Ehlers-Danlos Syndrome (EDS) has no cure.
Unfortunately, the epidural stopped working after just one day, and the pain medications that followed didn’t help. They not only failed to relieve the pain but also caused severe side effects. The pain was overwhelming. I ended up staying in the hospital for seven days, even though I was originally expected to stay no more than three.
Recovery was incredibly difficult. I had to wear straight leg casts for 12 weeks, and once they were removed, it took six months before I could walk again and nearly a year before I could walk without assistance. I had been told that recovery would take about three months after the casts came off, but that wasn't my reality. My healing process was much longer and far more challenging than expected.
Those months were the hardest I’ve ever faced physically and mentally.
Unfortunately, even after recovering from surgery, my pain persisted and began to spread to other joints. At that point, my mom decided to take me to a geneticist in North Florida who specialized in rare genetic conditions. The waiting period to see him was long; three months, but we were hopeful for answers.
When we finally met with him, he spoke with me and my parents at length about my pain, my surgery, and the unusually long and difficult recovery. After a full evaluation and several rounds of genetic testing, he gave us the diagnosis: Ehlers-Danlos Syndrome a rare genetic condition.
Suddenly, everything started to make sense. The chronic joint pain, the internal rotation in my legs, my sensitivity and reactions to medications, the ease with which I bruise, the frequent partial dislocations of my knees, and my prolonged healing time, they were all connected. It was a relief to finally understand what was happening to my body. But at the same time, it was heartbreaking to learn that Ehlers-Danlos Syndrome (EDS) has no cure.
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EDS is a genetic connective tissue disorder that affects the entire body; from joints to internal organs. It causes joint instability, partial and full dislocations, chronic pain, and a host of other complications.
There are thirteen different types of EDS, and I live with mine every single day. In photos and in person, people often see me smiling but that smile is sometimes a mask. The reality is, I live in a chronic state of pain. I’ve learned not to talk about it much, because of everything I went through in the past; being doubted, dismissed, and accused of faking. That experience taught me to stay quiet, even when I’m hurting. But I know now that staying quiet doesn’t help others who are living through the same thing. I may be just one face of Ehlers-Danlos Syndrome, but I am far from alone. There are so many others with invisible illnesses who are still waiting to be seen and heard. I want to use my voice to spread awareness; not just for myself, but for all of us who live behind a smile. It’s time to become Not Invisible. |
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