A Cure to Endure - My Path from Rare Disease to Advocacy

At 21, my world turned upside down with a rare bone cancer diagnosis—desmoplastic fibroma—in 2003, a time when online resources were scarce, leaving me isolated and uncertain about my treatment and future. The grueling surgeries, two recurrences, and over a decade of recovery taught me the harsh realities of a healthcare system that can be overwhelming, costly, and lonely. Yet, this struggle ignited a spark within me, transforming my pain into purpose as I navigated countless procedures and connected with orthopedic experts to understand what drives successful outcomes.

The turning point came during my recovery from that second recurrence in 2014, when I found solace in the emerging online world, despite the lack of specific bone tumor resources, and decided to take action. With a dining room overflowing with donated recovery aids from compassionate organizations, I began hosting virtual “giveaways” for my fledgling community, a labor of love that grew into Bone Tumor Warriors, connecting patients across continents. Those early days of late-night chats and shared stories with fellow survivors not only healed my spirit but also deepened my resolve to bridge the gap for others facing similar rare disease challenges.

This journey took a pivotal turn as my advocacy expanded beyond my condition, helping dozens of patients globally with chronic diseases, mental health challenges, and elder care by guiding them through treatment plans, specialist choices, and insurance navigation. With nearly eight years in healthcare technology, enhancing outcomes for at-risk populations, I’m now pursuing certification to amplify my impact, eager to empower others facing similar battles with the knowledge and compassion I’ve gained.

If you or anyone you know is in need of support through a complex and difficult diagnosis, I’d love to hear from you. Together, we can build a stronger support network for those navigating rare diseases and complex healthcare journeys.