Born With a Rare Condition, He Now Acts With Hollywood Stars

Adam Pearson has never let his condition define him—he’s redefining how we see others instead. As a British actor, TV presenter, and outspoken activist, Adam was born with neurofibromatosis, a genetic disorder that causes tumors to grow along his nerves. While his appearance has exposed him to prejudice and social stigma, he’s transformed those experiences into powerful advocacy. Today, he stands as a leading voice for inclusion and representation, especially for people with visible differences in the entertainment industry.

Adam has a twin brother, Neil.

Adam Pearson and his identical twin, Neil, were born on the 6th of January, 1985. When Adam was five, he accidentally bumped his head. The bump that developed after the injury didn’t heal but rather stayed on his head. He was later diagnosed with a rare congenital disease, neurofibromatosis type I, which causes benign tumors to grow on neural tissue and is, as yet, untreatable.

In Adam’s case, the tumors grew on his face and permanently altered his appearance. His twin brother Neil was also diagnosed with neurofibromatosis, but it manifested differently in him. He has experienced no changes to his appearance, but Adam says Neil has a “terrible short-term memory.”

Faced rejection and bullying at school.

The disease developed at the height of Adam’s childhood. Because of this, the boy was often teased at school, given all sorts of nicknames, and severely humiliated. Adam felt like a real outsider, but no one around him knew what to do about it. Pearson once shared one of the most painful incidents that happened to him at school. One of the children said that the teacher wanted to see him in class. However, when Adam got there, it wasn’t the teacher who was waiting for him, but a group of other children. “I went home with spit all over my blazer,” he explained. “That was horrific.”

However, Adam didn’t let years of bullying affect him, his self-esteem, or his future. As soon as he felt discouraged and the thought occurred to him that the bullies had beaten him, Adam reminded himself that this wasn’t at all productive, and that’s just the way he is. Pearson commented, “For me, it’s all I’ve ever known. It’s very much a part of me. It would have been like asking: ’Why am I this tall?’”

Made his screen debut in 2013.

After school, Adam graduated from Brighton University and worked in TV productions for the BBC and Channel 4. Then, in 2011, his life took a sharp turn. He received a call from the charity Changing Faces, saying that the producers were looking for someone to play a character in their film Under the Skin. Adam responded to the offer and starred alongside Scarlett Johansson. This was the long-awaited opportunity for him to show the world that anyone can achieve their dreams, regardless of their appearance.

This role was not his only one. In 2015, he appeared in two short films, Rodentia and Oddity, with the latter winning the Cheltenham Film Society’s Best Film award. In 2019, he played Rosenthal in the drama Chained for Life, starring alongside Jess Weixler.

More recently, in 2024, Pearson co-starred with Sebastian Stan in A Different Man, a film that explores themes of identity and self-perception through the lens of neurofibromatosis. The story follows Edward Lemuel (played by Stan), a withdrawn actor with the condition, who undergoes an experimental treatment that completely removes the tumors from his face. He then meets Oswald (played by Pearson), who shares the same condition but is quite the opposite—charismatic, confident, and fully at ease in his own skin.

Adam recalls helping Sebastian Stan develop his character: “We had a lot of really long Zoom chats early on, about the process and the character work and the back stories. He’s just a really kind and funny, very smart actor.” The actor recalls sharing with his co-star moments from his childhood, what his upbringing was like, and details about his daily life.

He actively takes part in different shows as a presenter.

Adam saw his career in acting as an opportunity to finally come out of the shadows. He presented several documentaries about himself and his condition on the BBC and starred in an episode of the documentary series Horizon. The episode was called My Amazing Twin and told the story of Adam and his brother Neil. In 2016, Pearson was nominated for a Grierson Award as UK Documentary Presenter of the Year.

Adam also started working as a presenter. He hosted the first episodes of Beauty and the Beast on Channel 4, where he also appeared as a reporter on the TV show Tricks of the Restaurant Trade. Moreover, Adam became a regular guest on the radio program The Bedtime Babble On, which airs on Spark Sunderland on weeknights at 10 p.m.

Adam encourages other people with his story.

Adam’s way is tough, but his story is also inspiring. He has a lot to tell about how to deal with different hard circumstances, how to be happy no matter what. So now he is also a motivational speaker.

Adam is a well-respected advocate for people with disabilities. He’s known for being brave and dedicated in both his work and everyday life. He wants to show others that they can overcome tough situations and should never hold back on their dreams. When he talks, he usually speaks about disabilities and why it’s important to include everyone.

Adam’s social life is really full and interesting. He has good friends who support him, as well as Adam supports them.

As an actor, speaker and just a socially active man, Adam has a lot of achievements:

• Contestant on MasterChef
• Nominated as UK Documentary Presenter of the Year at the 2016 Grierson Awards
• Main Speaker at TEDx Kalamata
• Film debut in Under the Skin
• Team Assistant in Commissioning Management for the BBC
• BA in Business Administration and Management from the University of Brighton

In a world that often equates beauty with value, Amit Ghose’s story challenges the norm. Living with a rare genetic condition, he turns adversity into purpose—proving that true strength lies in self-acceptance and advocacy. Discover the journey behind the scars.