MastoKids.org Educational Scholarship

Living with mast cell disease feels like trying to predict the weather in a storm I can’t see. One day, I can wake up feeling completely fine, and the next, it’s like my body has decided to wage war against me. It’s unpredictable, frustrating, and at times, completely overwhelming. I never imagined something so microscopic—so hidden—could have such a massive impact on my life and my family. The diagnosis itself was a long, winding road. At first, I thought the random swelling, rashes, and shortness of breath were isolated issues. “Maybe it’s just stress,” I would tell myself. But when the symptoms became impossible to ignore, I found myself in and out of doctor’s offices with no clear answers. I saw the worry in my family’s eyes each time I had an episode. I’d try to downplay how I felt, but the truth was, I was just as scared as they were. When I was finally diagnosed with mast cell disease, I remember feeling both relieved and defeated. I had an answer, yes, but it came with no easy fix. My family, as always, rallied around me, but I know it’s been hard for them too. Plans are often disrupted, dinners are sometimes spent at the ER instead of the table, and we’ve all had to learn to adapt to a “new normal.” My parents have become experts at spotting my triggers, and my siblings have mastered the art of knowing when to step in with support or when to just let me rest. It’s a strange thing to say, but mast cell disease has made us closer. We’ve learned to appreciate the quiet, good days more than we ever did before. The biggest challenge, though, has been my plans for the future. I’m determined to live a life that isn’t defined by my illness. I’ve had to adjust my goals, of course—I think carefully about my energy, my triggers, and what I can realistically take on. But these limits have taught me something important: even when life doesn’t look the way you imagined it, you can still build something meaningful. I’m pursuing a career in Information Systems and Technology because I want to solve problems that matter. Living with mast cell disease has shown me how much we rely on technology to keep us safe, informed, and connected. Whether it’s improving systems for medical care or designing solutions that help people with chronic illnesses, I want my work to make life just a little easier for someone else. If I can take the challenges I’ve faced and turn them into tools that help others, then I’ll know I’ve made an impact. Mast cell disease has changed me, but it hasn’t stopped me. It’s taught me patience, resilience, and the power of hope. It’s reminded me that my family is my greatest support, that progress doesn’t have to be perfect, and that small victories—like a day without symptoms—are worth celebrating. I don’t know what the future will look like exactly, but I do know this: I’m not giving up. I’ll keep learning, keep growing, and keep pushing forward. Mast cell disease is part of my story, but it isn’t the whole story. The rest is still mine to write.