All Episodes

July 30, 2024 20 mins

Matt chats to the BAFTA Award-winning YouTube star, and campaigner, Nikki Lilly.

At the age of six, Nikki was diagnosed with a high flow craniofacial AVM (Arteriovenous Malformation). A rare condition which causes life-threatening nose bleeds and extreme swelling. Since then, Nikki’s had almost one hundred medical procedures, as well as therapy, to help process the trauma and pain.

When Nikki started vlogging two years later, she was spending a lot of time at home. She often felt disconnected from the world, from her peers, and she was looking for something to do. But her YouTube channel had an unexpected impact – helping her reach millions of people, while covering a range of topics, from online bullying, to chronic illness, mental health, and make-up (a big passion).

Nikki was only 19 at the time of recording this conversation but she has wisdom and strength beyond her years. And she’s determined to make a positive difference by sharing her story and films.

Related links:

Nikki’s YouTube Channel

Tik Tok

The Butterfly AVM Charity

Nikki’s award-winning BBC documentary: Born To Vlog

(01:35) Nikki on her BAFTA Award (and fear of public speaking)

(04:16) Posting her first YouTube video (and dealing with negative comments)

(18:49) Nikki’s time in hospital and disconnection from her peers

(22:02) What is AVM? (Arteriovenous Malformation)

(26:33) How therapy has helped Nikki

(35:02) Dissociation and how Nikki grounds herself

(37:37) Importance of alone time

(42:45) Parental support

(45:36) The power in make-up

(51:36) Being an inspiration and advocate for visible difference


Hosted on Acast. See acast.com/privacy for more information.

Mark as Played

Advertise With Us

Popular Podcasts

Crime Junkie

Crime Junkie

Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.

24/7 News: The Latest

24/7 News: The Latest

The latest news in 4 minutes updated every hour, every day.

Stuff You Should Know

Stuff You Should Know

If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.

Music, radio and podcasts, all free. Listen online or download the iHeart App.

Connect

© 2025 iHeartMedia, Inc.