When Nusrit “Nelly” Shaheen was born, doctors warned her parents she might not survive the night. She was wrapped in thick layers of hard skin—a rare and severe condition called Harlequin Ichthyosis, which her parents had already lost three children to. But Nelly defied the odds. Today, at 33, she’s the world’s oldest known survivor of the disease.

Living with the condition isn’t easy. Her skin grows 10 times faster than normal, requiring hours each day in baths and scrubs to prevent infection. Despite the physically demanding routine, Nelly remains upbeat and independent. She works as a sports coach in Coventry, volunteers at a cycling class for disabled kids, and is passionate about raising awareness.

“People stare, they whisper,” she says. “But I’m just like anyone else—I want to live, work, and be happy.”

Nelly’s story is featured in the Channel 5 documentary Nelly: The ‘Snakeskin’ Woman. While the nickname reflects the appearance of her skin, she rejects the label as dehumanizing: “Just because my skin sheds like a snake doesn’t mean I am one.”

She credits her family—especially her brother Ash and his family, whom she lives with—for their constant support. And while she jokes about being a tomboy, she enjoys beauty treatments with her nieces and dreams of a world where people like her are seen and celebrated in magazines.

Recently, she prepared for a charity skydive to raise money for the hospital that has cared for her since birth. As a surprise, she received a special bath designed to ease her daily skincare regimen—a gift that brought her to tears.

“It’s hard being different,” she admits. “But I’ve learned to stay positive. My advice? Live life to the fullest.”