British TikToker and activist Nikki Lilly has never let her rare medical condition define her spirit. Living with arteriovenous malformation (AVM), a complex craniofacial disorder, Nikki began documenting her journey as a child—using YouTube and TikTok not only to share her story but to connect with others through honesty, humor, and heart. Now, with 9 million followers on TikTok and nearly half a million on Instagram, she’s built a powerful community rooted in authenticity and acceptance.

Nikki’s condition began showing at age 6, when veins on the right side of her face started swelling. Since then, she’s undergone over 90 surgeries and made hundreds of hospital visits. The journey hasn’t been easy—her disorder is so rare that it’s largely overlooked by medical research. But Nikki keeps going, not just for herself, but to raise awareness and create change.

Through her vlogs, she opens up about everything from mental health and facial differences to baking and beauty. And her impact is real—one cancer survivor even credited Nikki’s videos for helping her leave the house after a year of depression.

Growing up, Nikki didn’t see anyone in the media who looked like her. So she became the role model she wished she had—proving that differences are not flaws, but strength. She’s been recognized with several major awards, including a BAFTA and the Princess Diana Award, but what matters most to her is showing others that life can still be joyful and full of meaning, no matter the challenges.

“I just want people to know they’re not alone,” she says. “You’re never too broken or too different to live a beautiful life.”