Published: 14/04/2023 Tags: Stories

I hope for a future where a doctor can tell me why my body behaves the way it does

I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) at the start of high school. I do have an abnormal collagen 14 gene, but not enough people in the world have been found with the same discrepancy for it to mean anything. At the time, the diagnosis was simply an answer.

My shoulders and ankles had been dislocating since I was ten so it made sense. I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) and Crohn’s as well and managed my symptoms. Then in my sophomore year of high school I wound up in the ICU. My liver was failing, my lungs filling with fluid and other organs were starting their decline. It took 21 days in the hospital to be diagnosed with Macrophage Activation Syndrome. My Macrophages attacked my healthy organs and nearly killed me. I don’t know if this is connected to my hEDS, considering MAS is so rare, but I cannot help but wonder if my strange genetic abnormality had something to do with it.

My hEDS progressed very much with my hospitalization. I was weak and unable to walk after my month-long hospital stay. I did recover, but not for long. I developed Amplified Musculoskeletal Pain Syndrome and Complex Regional Pain Syndrome shortly after my MAS attack. It took six months to get me into a treatment center that thankfully saved my life and functionality. While hEDS on its own is absolutely debilitating, the connections it has to other rare or common disorders are uncanny.

I hope for a future where a doctor can point at me and tell me exactly why my body behaves the way it does. There were many times when my family didn’t think I would be able to graduate high school. During the time I was in the ICU dozens of doctors had no answers for me, and my family feared I would lose my life to my health. Now, I’m a freshman double major in college studying creative writing and publishing. I’ve written three unpublished books and am on a D2 swim team.

I want everyone to know that while hEDS is a struggle that brings on other health problems they can regain their life back. I want everyone diagnosed with EDS to know that while the condition is progressive, it’s not a sentence to a miserable life. Times will be hard and you will have low points for your health, but it is possible to bounce back and keep fighting. Even when you’re tired of fighting things out of your control, you don’t have to give up. Give yourself a short break and then carry on. I won’t say that it is easy, but it is so worth it.

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