British actor Adam Pearson, 49, who lives with neurofibromatosis type 1, says that his facial disfigurement has 'opened doors' for him. Now he wants to hold the door open for others with disabilities, and says Hollywood needs to do better at telling their stories.
The British actor, 39, who lives with neurofibromatosis type 1, wants to hold the door open for others — and he's challenging Hollywood to do better at telling stories about disabilityEileen Finan is a senior staff writer at PEOPLE. She's been working as a writer and editor at PEOPLE since 2000.
But cheeky optimism wasn’t easy to muster growing up in Croydon with his twin brother, Neil. As babies, the brothers were nearly indistinguishable.But when Pearson was 5, he bumped his head in his bedroom, and the bump never healed. After trips to specialist after specialist, he was diagnosed with neurofibromatosis type 1, an incurable neurogenetic disorder that can cause tumors.was on TV, the next day I’d hear that nickname,” he recalls.
Stan says collaborating with Pearson enriched his portrayal of a man who lives with disfigurement until he's able to transform his appearance. "Adam is a truth-teller and he’s incredibly honest. We clicked right away," says Stan. "He was kind in being open with me about his childhood and what he encountered in his life. All of it was vital towards me being able to construct a past for my character.
As seen in Adam Pearson and his brother Neil's cases, NF1 has"variable manifestations,” says Dr. Jaishri Blakeley, director of the“You can inherit the gene and have very few problems, or you can have an overwhelming burden.” Among the most common presentations of the condition are cognitive challenges and tumors, either in deep nerves or in nerves that go to the skin.
What Pearson is doing by speaking out and being a visible example of the condition"is so, so important," she says."He's setting an example for anyone who has a physical manifestation that doesn't match whatever 'the norm' is. He's challenging the idea that thereFor more on Adam Pearson, pick up the new issue of PEOPLE, available on stands nationwide on Friday, Sept. 20.
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