I’m finding new things to be passionate aboutPosted July 20, 2022
My story began when I was really young. I started subluxing and dislocating joints when I was in kindergarten and elementary school. I was on crutches on and off constantly, but at the time we just shrugged it off, especially because my mom had deformed bone structure in her knees that I had also inherited (causing dislocations).
I’ve always been super flexible and have been able to twist my joints in ways that most people can’t, despite the fact that everyone in my family is very un-flexible. I would also get allergic reactions to the most random things at random times. I could have an allergic reaction to something one day, and the next day I could touch it or eat it and be completely fine. On top of that, I got stomach aches pretty frequently and I had a really hard time fighting colds. Weird things happened to me all the time but were shrugged off under the pretense of those kinds of things being ‘normal for me.’When I was in middle school, my ribs and fingers started dislocating frequently (along with my knee caps). One of my physical therapists recommended that we start looking into Ehlers-Danlos syndrome, as we still hadn’t found any answers for all the things that were happening to me. For years we pursued rheumatologists and geneticists for answers and struggled in and out of the hospital as my symptoms progressed. I was passed from doctor to doctor as each one tried to figure out what to do to help. Finally, the summer before my sophomore year of high school, I received my diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). It was a relief to finally know a piece of what was going on, but at the same time, it was hard as a 14-year-old to accept how much this would impact the rest of my life. I had to stop playing the sports I loved so much, and I had to prioritize my health, which wasn’t something I had seriously thought about until then. Later in high school, my symptoms were getting out of hand again. I had constant stomach aches and lost nearly 35 pounds in nine months. I was never hungry, food made me nauseous, and the pain that came with eating scared me a lot. Doctors kept telling me I was ok or shrugged it off as an eating disorder since I was still in the BMI range for a girl my age. I was also having heart problems. I would have episodes of vasovagal syncope (triggered fainting) and then I would go into shock afterward. I would have heart palpitations and had to be even more careful when I exercised than I usually was. I had awful brain fog and was constantly drop-dead tired.
On top of all that, I have multiple genetic mutations that make it impossible for my body to metabolize pain medications. Even opioids, narcotics, steroids, and CBD have no effect on my pain. Most anesthesias don’t work very long and take a while to kick in. I have to deal with excruciating pain without any help. Doctors told me that they had run out of options or ideas, and sent me off to their next recommendation. I would be on waiting lists for months just to see a specialist who didn’t know what to do in the end. I felt fragile and alone. I loved my life with my family and friends, but the constant pain and problems took a toll on my mental health.In my junior year of high school, I meet an amazing doctor who specialized in diagnosing rare illnesses in children. After extensive testing, biopsies, and medication trials, he diagnosed me with Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome in addition to Ehlers-Danlos syndrome.
We are still trying to figure out how to help my stomach problems, heart problems, and all the new symptoms that show up along the way, but sharing my story has become a sort of healing process for me. EDS is hard for some people to understand. I can be high functioning one day, and then the next day (or maybe a few days) I won’t be able to get out of bed because my symptoms are so strong. There are many sides to EDS.
For so long, I felt like a burden to those around me, and I was afraid that my experiences would scare people away. There is so much more to my story, but in sharing these pieces I have found who my closest friends and confidants are, and I have a more positive outlook on the future. I have accepted being a teenager with disabilities, and have found new things that I am passionate about.
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