Lily Verrill

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Lily Verrill

Throughout her life, Lily Verrill thought she was normal. That all changed July 4, 2018, a date Lily has memorized. It was the day of her national dance competition, and the first time she felt the intense fatigue, numbness and heavy breathing that would define the upcoming months. Following her competition, Lily hid her symptoms from everyone, until she said it became too difficult. Three months later she told her parents and visited her primary care doctor, beginning the agonizing process of labelling her condition. Lily travelled from doctor to doctor, with the possible diagnoses of Multiple Sclerosis and Addison’s Disease looming. On Aug. 28, 2019, the answer came: Hypermobile Ehlers-Danlos Syndrome (EDS), a genetic disorder caused by defects in the protein collagen. Following her diagnosis, Lily said she began to realize she had symptoms of EDS her entire life. She said her diagnosis brought much needed clarity on her health. “I was this puzzle that not a single doctor in St. Louis could solve,” Lily said. “All I wanted was a diagnosis to confirm that it wasn’t all in my head, so I was relieved when I found out I had EDS. There hasn’t been a lot of research on hypermobile, so no one knows the exact mutation that caused it. I don’t really know what it is, and I probably will never know what it is, but it makes me who I am.”