Disability

'I get you're transgender, but what's up with your face?'

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Media captionYoutuber Stef Sanjati talks about her Waardenburg syndrome and being transgender.

Called feminine by some people, and "fish face" by others due to her facial difference, it took Stef Sanjati a while to realise why she felt so uncomfortable in her own skin. Stef - now a trans woman - shares her story with Lucy Edwards.

Fans of YouTube vlogs may already be familiar with 22-year-old Stef Sanjati, known for her make-up tutorials - a popular theme on the video site.

She has over half a million subscribers known as her Breadsquad, a name born from a running joke involving baguettes and how great bread is.

As a child, Stef was diagnosed with a genetic condition which has caused her to be deaf in her left ear, have bone mutations on her face, very blue eyes which appear further apart than on an average person, and pigmentation of hair and skin - a collection of symptoms known as Waardenburg syndrome.

Though she looked different from her peers, it was never something she worried about until she started getting bullied at school.

"Fish face, frog face or any aquatic animal that has wide spread eyes," became the go-to insults for the then male teenager.

"I remember when I was learning to draw faces in art class they would tell me 'put one finger-space between the eyes' and I was always, like - that's not my face, that's not true... for me it's two and a half."

Image copyright Stef Sanjati

As well as being called unkind names because of her face, Stef was also bullied for not being very masculine.

"I had this moment when I was a kid when this bully was picking on me for being a little bit feminine. He was insinuating that I was a scary homosexual."

Being a feminine boy with a non-standard face led her to struggle with identity and appearance throughout her school years - she knew she was different but couldn't work out exactly why.

Growing up in a small town in Southern Ontario, Canada, she says there were no resources to help her explore her "true self". At that point the web, where she now thrives, wasn't the seemingly endless and diverse source of information it now is.

Knowing little about gender identity, she figured she must be gay and so "came out" in ninth grade at the age of 13 - and lost all her male friends as a result.

"The first day of the second semester of ninth grade, I went to sit next to my best friend in my science class and he told me - he looked me dead in the eye with a stone face - he said 'If you sit next to me I will kill you'."

Stef describes herself as a "ball of self-loathing" at this time, and "hated" everything about herself.

"I couldn't look in the mirror without hyperventilating. I kind of just withdrew from the community and from my peers."

She felt abandoned, isolated and confused and so turned to her computer as a "digital escape".

"I pretty much took my life and moved it from the small town I grew up in and onto the internet."

While online, she played a lot of games that were very different to real life. She says: "I plunged myself into fantasy worlds, where there were people with faces like mine and people that were a little gender divergent - and it was cool."

Stef got into social media because it was a place where she could express herself away from the bullies. But, despite trying hard, reality kept seeping in.

Image copyright Stef Sanjati

Still identifying as a young man, though not feeling it, she felt isolated and, when she reached college, she adopted what she calls a "hyper masculine image" by growing a beard and wearing blazers. But it didn't make her feel better.

"That is when I ended up falling back into the femininity. That's when I realised this has to mean something and I had to do some research," she says.

Part of Stef's self-exploration was facing the discomfort, or dysphoria, she had with her body.

But it was only when her mind wandered onto matters of parenthood that she started to realise the problem.

Stef found herself asking "Why am I so uncomfortable with the word father or dad though I want to be a parent so badly?" She says that it was in realising she wanted to be a mother, not a father, that made her appreciate that all her discomfort was about gender.

"Then I realised I was transgender. Then I understood what I needed for myself to be truly happy."

It was at this point she started to document her transition to becoming female on her YouTube channel.

After making videos about it for a while, Stef began to get a different type of question - not about gender, but "what happened to your face?"

She responded with a video called My face: Waardenburg syndrome. It went viral and presently has over eight million views. Stef believes the syndrome hadn't been represented in media before she created the video, and it also got her noticed.

"I'm very grateful for that video," she says. "It gave me my audience."

Stef continues to be a role model for people struggling with appearance and gender.

One fan comments: "I've been watching since you came out, and it's so buck-wild to see you through your transition and become happier and excited about your progress. I can't wait until I go on HRT so I can start feeling more like myself too."

Stef uploads every week on her YouTube channel where she tells her Breadsquad to "embrace" who they are, and gives updates on her next surgery.

Viewers hear a lot about her self-exploration. In hindsight, she says, the difficulties she had with her appearance were never about those syndrome traits she was born with - she still has eyes which are slightly further apart than other people and she has a white stripe of hair at the front of her head.

She says it was about her gender and the way puberty affected her face - and that was what her facial-feminisation surgery addressed, not her impairment, as she has come to love the other-worldly look she has.

"I was very specific with my surgeon to not alter any of my Waardenburg syndrome features."

Listen to Lucy Edwards interview with Stef on the BBC's Ouch podcast.