My Lymphangiomatosis Report

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Albert Einstein’s Theory of Relativity states all motion must be defined relative to a frame of reference and that space and time are relative. This is the lens through which I choose to see life. When I was nine, I was serendipitously diagnosed with an ultra-rare disease, called Lymphangiomatosis. Overnight, I became a medical anomaly. I was the one in seven million. I was a perfectly healthy kid except for one tiny glitch: my lymphatic system had grown haywire. This single problem turned into many as my lung collapsed and then my spine did, too. This did not ruin my life, but it redefined it. During my parents’ quest for answers, I have been shuffled in and out of the greatest clinical and research hospitals in the country, as well as some of the worst. I have seen oncologists, hematologists, endocrinologists, surgeons, orthopedists, interventional radiologists, pulmonologists, dermatologists, nutritionists, integrative medicine specialists, homeopathic doctors, and one spiritual healer from India. I have been in a clinical trial, a lymphatic imaging study, and had one of my ribs and some lymphatic fluid removed for research. These experiences were where I started to gain perspective. …show more content…

Some cried; some were in pain. Some were scared; some dragged medical equipment in their wake, while others pushed walkers. All of us had a diverse range of adversities, all searching for answers, some more urgently than others. And although I still could not play goalie in soccer or attend my senior class rafting trip, I was able to swim competitively and play clarinet in the band, while the boy next to me had to pull around an oxygen tank. Unlike many others, I could still attend school. Patients with my disease are typically too frail, immunocompromised, or on a list for a lung transplant, never mind get the opportunity to go to college. So, getting back to Einstein, relatively speaking, I am definitely

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