“My experience growing up was certainly unique. My sister Kate and I both have Gaucher disease, and my mother founded @gauchercanada. Understandably, everything in our house was "Gaucher Gaucher Gaucher" all the time. But whenever Kate and I left the house, we'd work overtime to conceal our condition. It wasn't that we couldn't participate in soccer—it was that soccer sucked. Stuff like that. We were constantly trying to hide that we are different. We hadn’t yet learned that our differences are where our true strengths lie.
But, as we grew older and found our own voices, we realized that our challenges had in fact provided us with an incredible set of skills and resiliency. Our rare experiences prepared us for the paths we would choose for our lives. Kate has become a health care professional, and there’s no one with a more passionate and empathetic approach to patient care. As for myself, I can say with complete confidence that living with Gaucher shaped me as a communicator, a leader, and an advocate.
“As we grew older and found our own voices, we realized that our challenges had in fact provided us with an incredible set of skills and resiliency. Our rare experiences prepared us for the paths we would choose for our lives.”
The disease that I saw as a personal injustice as a child has ended up being the catalyst for a lifelong career in the pursuit of broader social justice, not only in the rare disease sphere but spanning many causes including the non-profit organization I've founded to address menstrual health equality.
It turns out that life with a rare disease is a master course in communication. At a certain point in my journey, I realized the power of storytelling to affect change at both the individual and community level. I’ve finally found my voice, and it’s here to stay.
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