Despite Suffering From a Unique Facial Condition This Young Woman Uses Her Platform to Educate People
Nikki Lilly, a British TikToker, influencer, and activist, started sharing her personal journey at a young age. She opened up about her rare medical condition called arteriovenous malformation through vlogs. Nikki’s authenticity and positive demeanor resonates with her viewers, whether she talks about facial differences, mental health, baking, or beauty. She has since expanded her presence on TikTok, amassing 9 million followers, and has also gained a following of 420K on Instagram, creating a vibrant community around herself.
Her condition started making its appearance at a very young age.
Her parents explain that Nikki was a joyful child living life to the fullest. However, at the young age of 6, she began experiencing the emergence of prominent veins on the right side of her face. This was accompanied by facial swelling and severe nose and gum bleeds. After numerous examinations, it was determined that Nikki had a congenital high-flow craniofacial arteriovenous malformation (AVM).
Over the past 7 years, she has undergone 70 major surgeries and made over 350 visits to Great Ormond Street Hospital to manage her symptoms. Her treatment is led by Mr. David Dunaway, the esteemed Head of the Craniofacial Team, who collaborates closely with Ophthalmology, ENT, and Interventional Radiology specialists.
Unfortunately, due to the rarity of Nicole’s condition, pharmaceutical companies have shown limited interest in investing in or researching potential treatments. Specific research efforts are crucial to discover improved therapies and, ultimately, find a cure.
Nikki herself has said that personal experiences have taught her how to endure the challenges of life and their impact on her health. The uncertainty of tomorrow is a constant reminder that we often become consumed by our daily concerns—a natural aspect of being human. However, it is crucial for her to take a step back and consider how she can make the most of the circumstances she’s been given.
During difficult times, it can feel overwhelming as it permeates every aspect of life. Through her videos and personal journey, she aspires to demonstrate to young people that it is never too late to initiate change. The power within them is immeasurable, even if self-belief may be lacking. She considers herself a testament to that truth.
She has created a very influential platform online.
Her honesty and authenticity has made Nikki so popular amongst the online world and there are many examples of how she is inspiring people. A courageous woman, who was battling cancer, left a heartfelt comment on one of her videos. In her candid and brave message, she revealed that she had been confined to her home for over a year due to overwhelming depression, which had caused her to lose hope and a positive perspective on life and herself. However, after watching her videos, she found the strength to venture outside her house 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 not a stranger to public recognition either since she has received multiple accolades, including the Princess Diana Award for Exceptional Bravery in 2014 and the 2018 Emmy Award for Best Factual Program. She also received a special BAFTA award for her work in advocating for people with noticeable differences.
But the one thing she’s most proud of is the fact that she is still here, making the best out of her situation and living her life as well as she can. By this point, she has had about 95 operations, some of them coming with extreme hardships afterward.
There are so many examples of inspirational people out there, including the personal trainer who helps people with disabilities. Or you might want to read about the girl with Down syndrome that became a model despite her doctor’s prognosis. And let’s not forget about the woman whose goal is to make all women feel comfortable in their own skin.