Venice Beach, California( CNN) As a small child, she frisked hide-and-seek with nannies, rent out IVs to scoot around the hospital flooring naked and left an blowup of glare in her aftermath.

And as an adult, Claire Wineland has continued living out loud, even as their own bodies fails her.

Claire, 20, has cystic fibrosis, a genetic and terminal progressive sicknes that’s territory her in the hospital for a one-fourth of their own lives. Ask what’s on her bucket roster, and she’ll respond she doesn’t have one.

Fixating on a checklist of points before she goes “sounds exhausting, ” she answers, especially “when you’ve been vanishing your entire life.” Instead, she’d preferably focus on doing all she can in each moment.

It’s a sort of insight that acquires some describe this California free spirit as “an old-time soul” or “a little Buddha.”

I meet Claire in a Venice Beach caf; everyone who works there seems to know her. She’s on a mission to normalize sickness, push back at those who patho her and have a meaningful life for however long it lasts. Although she surely has her down eras — “Who doesn’t? ” she indicates — this self-described “goofball” undertakes life with laughter and the sort of charisma that draws people to her.

Still, she reads, she must develop parties to experience comfortable around her.

“I can’t simply expect people to know what to say, ” she reads, “I have to attain them find me as more than my illness.”

She’s been working at it on a number of figureheads: In high school, she started a series of videos that get viral and penned parts for national audiences, including one for CNN. She’s appeared in magazines, on television testifies and at teen gift ceremonies. She’s heading up a foundation, writing a record — she predicts it’s not “another glad diseased person book” — and carrying in as much as her 5-foot-2, 95 -pound frame can handle.

Through it all, she yields public talks. On this day, that’s at a TEDx event in Encinitas, a beachside community 100 miles south of her apartment in LA’s Venice Beach.

We’d arrangements to make the train down for the episode. But she’d been fighting a fever as high-pitched as 103 the previous day, research results of one of many illness her body endlessly campaigns. When I offer to drive instead, she seems counteracted. I am, more.

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