Nikki Lilly, a TikToker from England with a rare facial condition, has become a prominent influencer and activist. She began sharing her journey with arteriovenous malformation (AVM) through vlogs, and her sincerity and positivity resonate with her audience, whether she’s discussing facial differences, mental health, baking, or beauty.

Her parents recall Nikki as a joyful child who lived life to the fullest. However, at age 6, noticeable veins began appearing on the right side of her face, accompanied by facial swelling and severe nosebleeds and gum bleeding. After numerous tests, Nikki was diagnosed with a congenital high-flow facial arteriovenous malformation.

Over the past 7 years, she has undergone 70 major surgeries and visited Great Ormond Street Hospital more than 350 times to manage her symptoms. Her care is led by Mr. David Danaway, a respected craniofacial team leader who collaborates closely with ophthalmology, ENT, and interventional radiology specialists.

Unfortunately, due to the rarity of her condition, pharmaceutical companies have shown limited interest in investing in or researching potential treatments. Targeted research efforts are crucial for finding improved therapies and ultimately a cure.

This is why she felt compelled to share her story—sometimes, you have to be the catalyst for change in the world. She saw it as an opportunity to make a positive impact in any way she could. Even if she could only educate one person about her condition and improve their understanding, it would be worth it. She wanted to shed light on the realities of living with a chronic illness and visible differences, hoping to broaden perspectives for others like her.

As a result, Nikki has received several awards, including the Princess Diana Award for Exceptional Courage in 2014 and an Emmy in 2018. She also earned a special BAFTA Award for her work advocating for people with visible differences. But what she is most proud of is that she is still here, living her life as well as she can. By now, she has had around 95 surgeries, some of which she has undergone with tremendous difficulty.