A journal entry of my thoughts from Rare Disease Day, February 28th 2021:
My rare disease truth: I always say I feel like I am living a double life. One side is being a 21 year old college student, with the typical activities of exams, FacetTiming friends, laughing with my sisters, finding new books to read. The other side is the fact I have fought to stay alive since age 16. I have lost multiple friends from the same illnesses. I have both physical and mental scars on my body, each one telling its own unique story. I have learned to be my own best advice since age 13. My health is my full time job. I have spent most of the new year discussing appointments, planning future surgeries, researching symptoms, and working as hard as I can to keep myself as healthy as possible. Instead of planning parties and thinking about the latest gossip, I have spent my teenage and young adult years working relentlessly through my health issues.
Both of these two sides make me who I am today- I am proud of that. I am privileged because I found a team of doctors who tried experimental treatments, doctors that never gave up. That is not the case for most patients with my diseases. Everyday I acknowledge that the only reason I can eat and am here today is because of people who thought outside of the box. The ability to survive and life for patients with rare diseases should not be so fragile, it should be a guarantee. I, and my community of fighters, should not live knowing that any day our health could take a turn for the worse.
Still, we persevere. I hope this Rare Disease Day we take time to use our voices for change. Recognizing the disparities within our healthcare system. Recognize how the pandemic has showed how those with serious illnesses often bear the weight of society’s shortcomings. Recognize that we need more research, awareness, and cures. That healthcare is a fundamental human right.
I share my journey in hopes that one day a child presenting with symptoms and diseases similar to myself, afraid of the future, can be told “there is a cure for this, and you won’t have to suffer for much longer”. Our rare disease community is beautiful.
Listen, learn, and advocate today (and everyday) for those fight for a better quality of life,