I have spent most of my life building brands, leading businesses, and creating spaces where people feel inspired — whether through marketing, storytelling, design, or human connection. On paper, I am a seasoned marketer with over two decades of experience in retail and luxury European brands, a double MBA holder, a keynote speaker, and an aspiring board member. But behind the professional titles lies a far more personal journey, one shaped by resilience, motherhood, advocacy, and a rare disease called Von Hippel–Lindau syndrome (VHL).
VHL is not just part of my story; it is woven into the story of my family. As both a woman living with VHL and a mother raising three children affected by it, I have experienced firsthand the uncertainty, fear, surgeries, waiting rooms, and emotional weight that come with living under the shadow of a rare genetic condition. Yet alongside the hardship came something equally powerful: perspective, strength, and an unshakable belief in science, research, and the importance of raising awareness.
This blog is not about victimhood. It is about resilience. It is about choosing hope over fear, advocacy over silence, and truth over misinformation. It is about navigating life, business, motherhood, and identity while carrying the invisible weight of a rare disease and still refusing to let it define the limits of our future.
If my journey has taught me anything, it is this: resilience is not a single moment of courage. It is a decision made over and over again — to keep showing up, to keep speaking up, and to keep believing that one day, through science, research, and collective awareness, there will be a cure.
1 comment
wow!! 39How our lives turned upside when life threw a rare disease our way.