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The first sign that something was wrong was my ankles. Anyone walking behind me could see that my feet wobbled as I walked. As a kid, I didn’t realize this was wrong, and I thought that everyone’s feet hurt after walking for 15 minutes. I went to the doctor, and they told me to get shoe inserts and that I’d grow out of it. After that, my injuries and health problems picked up.
My elbows, wrists, and ankles were always wrapped in something, but I was told it was tendonitis. I was throwing up at least once a week and was told it was a conversion disorder. I was diagnosed with asthma after wondering why I was always coughing. In photos from my first endoscopy, my throat was completely covered in white stripes, which I learned were white blood cells attacking my esophagus. I was diagnosed with eosinophilic esophagitis. Despite having a victory, a solid diagnosis, I was still regularly accused of faking injuries, faking sickness, all for attention.
In freshman year, I moved to a boarding school in rural Iowa, and I loved it. I could run, play sports, and participate in most activities as normal, but throughout the year, mysterious things started to happen. I was sick all the time, but my biopsies came up clear for white blood cells, and more worryingly, I was becoming less mobile. I stopped being able to run without ankle braces, and then I couldn’t run at all. Walking became difficult.
My x-rays came up mostly fine, my blood had a few abnormalities, but they could all be explained away. No one really knew. I looked online, almost obsessively, trying to figure out what was going on with me, and at some point, I found The Ehlers-Danlos Society’s website. It fit me perfectly. Blood pressure, digestive issues, skin problems, and most of all, bendiness. I brought it up to my rehab medicine doctor, and since then, we’ve been treating it as such. It was originally proposed as hypermobile Ehlers-Danlos syndrome (hEDS), but due to skin issues and general stretchiness, I’m on the waiting list for genetic testing, meaning that as of now, I have no confirmed diagnosis.
I’ve been on and off crutches, gotten an NJ tube then had it removed after pyloric botox, started getting iron infusions, and worked hard to do what’s healthy for me. As of when I’m writing this, I walked 2.5 miles today without crutches, and I’m able to eat on my own. I know that improvements like this aren’t possible for everyone, but self-care, for me, and knowing my limits, has been incredible.Tags: awareness, Diagnosis Journey, Ehlers-Danlos syndrome, Self-Advocacy, self-care, skin
Categorized in: Stories