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

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