British TikToker, influencer, and activist Nikki Lilly has spent most of her life sharing her story with honesty and courage. Living with a rare condition called arteriovenous malformation (AVM), she uses her platforms—where she has over 9 million TikTok followers—to talk about facial differences, mental health, baking, and beauty.

Nikki’s symptoms began at age six, when swelling, visible veins, and frequent bleeding led to her AVM diagnosis. Since then, she has endured more than 90 surgeries and countless hospital visits. Despite the grueling treatments, she’s become a beacon of resilience, determined to raise awareness for rare conditions often overlooked by medical research.

Her openness has touched many lives—like the woman battling cancer who, after watching Nikki’s videos, found the courage to leave her home for the first time in over a year. For Nikki, these moments matter most. Growing up without role models who looked like her, she chose to become that figure for others, showing that visible differences don’t define a person’s worth or potential.

Along the way, Nikki has earned honors including the Princess Diana Award, an Emmy, and a BAFTA Special Award. Yet, her greatest achievement, she says, is simply living life fully—proving that a rare disease can’t take away joy, purpose, or the ability to inspire.