Adam Pearson can’t help but stand out in a crowd; he turns heads, garners whispers and stops people in their tracks. They look, they point and they smile, and nowadays it’s all for the right reasons.

For despite suffering from type 1 neurofibromatosis (NF-1), a rare genetic disfigurement that has caused benign tumours to spread across his face, the 29-year-old actor has become a bit of a darling amongst cinema audiences, starring opposite Scarlett Johansson in the critically acclaimed sci-fi thriller Under the Skin.

That he has acting skills is obvious but Adam is also using his talent to fight for facial equality, and change the face of film forever.

“We live in such a media-heavy culture now,” Adam says from his home in Croydon, UK.

“People are constantly bombarded by airbrushed images and we put celebrities on pedestals. I think we have done beauty a massive disservice by quantifying it and giving it boundaries. Raising awareness around the arena of disfigurement is important. With the mainstream media throwing out images of unattainable perfection, image has become the be-all and end-all to our current generation.”

As for his co-star Johansson, who plays an alien seductress in the film, Adam says, “Scarlett has a really interesting role. She’s an alien who sees the world without knowledge, and therefore, prejudice. She doesn’t notice my appearance when our characters initially meet and that’s a real juxtaposition to what the real world would be like.”

His fierce resolve to change such perceptions has seen Adam star in documentaries and feature on morning chat shows across the UK. With his dry wit and warm nature, he has slowly but surely pushed his desire for facial equality in a time when younger generations are seeking extreme measures to obtain aesthetic perfection.

He wants to change the way people with disfigurement are treated, so that other children won’t have to suffer the way he did as a child. For Adam is only too aware of how the real world regards people who are ‘different’, as exemplified by the years of cruel teenage taunts that saw him called Scarface and Quasimodo.

“Primary school was fine because at that age life is much easier,” he says. “I have had a friend for 25 years and we bonded over the fact we both liked the colour red.”

But secondary school was difficult. “It was really tough,” Adam admits. “I didn’t handle it very well and people at that time just told me to ignore it. There’s that awful phrase: ‘sticks and stones will break your bones but words will never hurt you’. But all I can say about that is [whoever created it] obviously didn’t have to go through secondary school.”

It was a trying time for Adam, whose condition had started to worsen since discovering his illness by accident. “I got the diagnosis when I was six years old,’’ he says. “I was messing about in my room, probably trying to be Hulk Hogan, and I hit my head on the windowsill. It came up in a big bump and at the time my parents just thought ‘boys will be boys’ and waited for it to go down, but when it didn’t, that’s when we started asking questions.”

It was several months before Adam was diagnosed with NF-1, a progressive and diverse condition that manifests variably amongst sufferers from coffee-coloured birthmarks to epilepsy.

In Adam’s case his face became “consumed” with tumours. “It developed rather quickly,” he says. “But there is no one-size-fits-all for the condition; there’s a broad spectrum of how severely someone can or cannot be affected. My [twin] brother Neil also suffers from the condition but he has short-term memory loss as a consequence so he has to constantly make notes and get into good routines.”

For Adam it was less about behaviour and more about appearance, which is what led him to seek support from Changing Faces, a charity for people and families living with conditions, marks or scars that affect their appearance.

“I first came across them when I was eight,” he says. “I had a lot to cope with and they helped me deal with my baggage. After that I went off and tried to get on with my life but when I was 21 they set up a group called the Young People’s Council and that’s when I really got involved.”

The council is a group of 13- to 25-year-old end-users of the foundation’s services, who through personal experiences of living with unusual appearances help to provide a voice for the younger generation. Adam didn’t hesitate to get on board and from that time became an ambassador representing the organisation, attending events and giving talks so that he could, as he says, “campaign by example”.

In 2012 Changing Faces launched the Face Equality on Film campaign calling for balanced portrayals of people with disfigurements. It came after the British government ran a survey that showed people associated evil characters with scars, burns and other facial conditions.

“We trawled through hundreds of films looking for on-screen representations of disfigurement,” Adam says. “And it became obvious that scars are used as shorthand for evil. If you look at the bad characters in James Bond movies or Captain Hook for example, their malevolence is portrayed through scars.”

And as for using prosthetics to portray the ‘baddies’, Adam makes a valid point. “You wouldn’t ‘black up’ someone to play the role of a black person so why put actors in prosthesis and have them play evil characters?”

He adds, “Our aim was to challenge perception, we didn’t want to stand on a soapbox and tell people they were wrong; we wanted to raise awareness and spark debate around the issue. At no point however did we intend to villainise the film industry.”

Which is why when director Jonathan Glazer chose to cast Adam in Under the Skin it was such a turning point for the film industry.

Adam says, “It sparks debate from a psycho-social perspective, but also from an industry perspective; that people are out there with disfigurements and scars who can act.”

As for Adam, the movie has helped him be recognised for who he is – a young man with a witty sense of humour, a definite charm, and a passion to fight for a cause, not just a guy on the street to be stared and pointed at with disdain because his condition makes him look different.

“Now I am the guy from Under the Skin,” he says. “Since the film came out I’m recognised almost every day. It makes me feel good; at least people are noticing me for the right reasons.”