British TikToker, influencer, and activist Nikki Lilly began sharing her life story at an early age, using vlogs as a platform to discuss her uncommon medical condition known as arteriovenous malformation. Nikki’s genuine and optimistic personality deeply connects with her audience, whether she’s addressing topics like facial differences, mental health, baking, or beauty. Her TikTok presence has grown significantly, accumulating a following of 9 million, and she has also attracted 451K followers on Instagram, building a thriving community around her.
Her condition began manifesting itself at a very early age.
Her parents describe Nikki as a joyful child who embraced life to the fullest. Nonetheless, at the tender age of 6, she started noticing the appearance of prominent veins on the right side of her face, coupled with facial swelling and frequent nose and gum bleeds. After undergoing several examinations, it was confirmed that Nikki was suffering from a congenital high-flow craniofacial arteriovenous malformation (AVM).
Over the course of the last seven years, Nikki has endured a staggering 70 major surgeries and has made more than 350 visits to Great Ormond Street Hospital in order to effectively manage her symptoms. Her treatment is overseen by Mr. David Dunaway, the highly respected Head of the Craniofacial Team, who works in close collaboration with experts from Ophthalmology, ENT, and Interventional Radiology specialties.
Regrettably, due to the rare nature of Nikki’s condition, pharmaceutical companies have displayed limited interest in investing in or conducting research for potential treatments. Focused research efforts are essential to uncover improved therapies and, ultimately, to discover a cure.
Nikki has personally acknowledged that her own experiences have been powerful teachers, showing her how to persevere through life’s trials and their effects on her health. The unpredictability of what lies ahead serves as a persistent reminder that we tend to become engrossed in our day-to-day worries—a common aspect of our humanity. Nevertheless, it remains vital for her to pause and reflect on how she can maximize the opportunities presented by her unique circumstances.
During challenging moments, the weight of adversity can be all-encompassing, affecting every facet of one’s life. Through her videos and personal journey, Nikki aims to show young individuals that it’s never too late to initiate transformation. She believes that the potential within them is boundless, even in times when self-confidence may be lacking. In this regard, she regards herself as living proof of this profound truth.
She has established a very influential online platform.
Nikki’s honesty and authenticity have catapulted her to popularity in the online sphere, and there are numerous instances showcasing how she serves as an inspiration to people. One particularly courageous woman, who was fighting cancer, left a deeply heartfelt comment on one of Nikki’s videos. In her candid and fearless message, she disclosed that she had been housebound for over a year due to debilitating depression, which had led to a loss of hope and a positive outlook on life and herself. Yet, after watching Nikki’s videos, she discovered the inner strength to step outside her home for the first time.
She viewed social media as a chance to raise awareness about her rare medical condition and the importance of embracing visible differences. During her upbringing, especially in her younger years, she lacked role models or idols who represented her or her experiences. The media portrayed a narrow image of perfection, filled with flawless Barbie dolls, princesses, and unblemished heroes in movies. She couldn’t identify with any of them.
That’s why she felt compelled to share her story—because 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 possible. Even if she could educate just one person about her condition and increase their understanding, it would be worthwhile. She wanted to shed light on the realities of living with a chronic illness and a visible difference, hoping to broaden perspectives.
Nikki is no stranger to public acclaim, having garnered multiple prestigious honors. These include the Princess Diana Award for Exceptional Bravery in 2014 and the 2018 Emmy Award for Best Factual Program. Additionally, she was bestowed with a special BAFTA award for her tireless advocacy on behalf of individuals with noticeable differences.
However, what she holds most dear is the simple fact that she continues to persevere, making the most of her circumstances and living her life to the fullest. To date, she has undergone approximately 95 operations, some of which have been accompanied by considerable post-operative challenges.
It’s good to know that Nikki is not the sole source of inspiration when it comes to demonstrating that rare diseases need not impede living a fulfilling life. Another uplifting example is the story of a man who was born without a jaw, yet this didn’t deter him from finding the love of his life.