Nikki Lilly, a British TikToker, influencer, and activist, has used her platform to raise awareness about her rare medical condition, arteriovenous malformation (AVM).
With her authentic and positive approach, she connects with her audience on topics like facial differences, mental health, and beauty. Her TikTok account has gained 9.2 million followers, and her Instagram has 555K followers, fostering a supportive community.
At the age of six, Nikki began experiencing symptoms like prominent veins, facial swelling, and frequent nose and gum bleeds. After multiple evaluations, she was diagnosed with a congenital high-flow craniofacial AVM.
Over the years, she has undergone 70 major surgeries and made over 350 visits to Great Ormond Street Hospital for treatment, with her care led by the esteemed Mr. David Dunaway.
The rarity of Nikki’s condition has resulted in limited interest from pharmaceutical companies for research and treatment. This has highlighted the need for further research to develop better therapies and find a cure.
Despite the challenges, Nikki has embraced her circumstances and views her experiences as teachers, helping her persevere through life’s uncertainties and inspiring others to reflect on making the most of opportunities.
Nikki uses her platform to encourage young people, demonstrating that it’s never too late to embrace change and grow, even during times of low self-confidence. Through her journey, she has shown that everyone has the potential to overcome adversity and find strength within themselves, making her an empowering role model for her audience.
Her honesty has resonated with many, including a woman battling cancer who shared how Nikki’s videos helped her find the strength to step outside after over a year of severe depression. Nikki’s openness has been a catalyst for change, promoting visibility for people with rare medical conditions and challenging societal norms of perfection.
Nikki’s advocacy has earned her numerous prestigious awards, including the Princess Diana Award for Exceptional Bravery and the 2018 Emmy Award for Best Factual Program. Yet, she values most the resilience she has shown throughout her 95 surgeries, continuing to inspire others to live life fully, no matter the obstacles they face.
Her condition began to manifest at a very early age.
She has built a highly influential online platform.
