About Me

Finding My Voice (And Helping You Find Yours)

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Welcome! I’m so happy you found your way here. My name is Holly, and I am a survivor of Gorham-Stout Disease.

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My journey hasn't been easy. GSD has taken my bottom teeth, my jaw (twice), and at times, my hope. I’ve lived through the exhaustion of reconstructive surgeries and the frustration of being dismissed by the medical community. But as my son wisely told me, sharing this story is where the healing begins.

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Today, I am comfortable, confident, and fueled by faith. I’ve moved past the days of being "just a patient" to becoming an advocate. This blog is a space for:

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• Awareness: Shining a light on a disease so rare it’s often invisible.

• Compassion: Reminding the world that rare disease patients need kindness and patience, not just prescriptions.

• Connection: Building a community of support.

Whether you are a medical professional looking to learn or a fellow warrior looking for hope, I’m glad you’re here.

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With love and perseverance, Holly