Hello everyone, my name is Lillyan, and I am nearly 18 years old. A few years ago, I was diagnosed with EDS, POTS, gastroparesis, and MCAS. Since then, I have spent much time in and out of hospitals for testing, treatments, and help for symptoms that are challenging for me to manage at home. EDS (Ehlers Danlos Syndrome) is a rare genetic disorder that comes with hypermobility, stretchy skin and ligaments, and constant pain in my spine and joints. POTS (Postural orthostatic tachycardia syndrome) is another rare, autonomic disorder that affects every system in my body, but primarily my heart. Because blood doesn’t move up to my heart fast enough, when I move from sitting to standing, I often faint or experience painful cardiac seizures that accelerate my heart to 170 beats per minute, exhausting me for weeks. Additionally, I have been diagnosed with Gastroparesis, a condition that paralyzes the stomach and doesn’t allow me to eat by mouth, making an NG tube (feeding tube) necessary. Finally, I have MCAS (Mast Cell Activation Syndrome), a condition which creates too much random histamine, causing my body to have allergic reactions to certain medications, rain, grass, soaps, clothing detergents, and more. I have spent the past six weeks in the hospital, fighting to get back to my daily life. Unfortunately, this last POTS flare up brought on eight cardiac seizures that have greatly set me back. I have had to defer from college for a semester until I am able again to manage daily tasks. In order to regain my independence, my doctor, at Shirley Ryan Ability Lab, has recommended I get a service dog to help me manage and to keep me safe. Unfortunately, insurance doesn’t cover the high cost. I am hoping to fundraise enough money to afford a service dog so I can live independently and attend college this winter with the goal of going into medical research to find a way to make life better for those, like me, with an autonomic disorder. With great thanks for any help you can offer, Lillyan
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