A life of advocacy

In Memoriam: Claire Wineland, patient advocate, YouTube personality and OMED 2017 speaker

The 21-year-old captivated and inspired thousands with her honest, frank commentary on living with a progressive, life-threatening disease.

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Just a week after receiving a lung transplant, Claire Wineland, a passionate patient advocate who had cystic fibrosis, has passed away. Wineland suffered a stroke following her lung transplant, which caused her death, according to CNN.

Although Wineland was just 21 when she passed on September 2, she reached and supported thousands by sharing her experience with others, often through her very popular YouTube videos. She additionally set up a foundation at age 13 for cystic fibrosis patients and their families and gave talks on patient advocacy, including one in which she addressed DOs at OMED 2017.

In an emotional Facebook post, Laura McHolm, the chair of Claire’s foundation, reported yesterday that Claire passed peacefully without pain, and with both of her parents by her side.

“They saw her into this world for her first breath and were with her for her last,” she wrote. “We know Claire was loved all over the world. Your prayers, support and encouraging words, have been a huge source of strength for her and her family. Thank you from the bottom of our hearts for your massive amazing out pouring [sic] of love.”

Last year, Wineland talked with The DO about her work and what good doctors do differently.

“I’ve always thrived when I had doctors who expected a lot from me, and expected me to take charge of my own treatment,” Wineland said. She also noted that understanding a patient’s illness in the context of their whole life was critical for optimal care.

“You have to look at a patient’s whole life,” she said. “What’s important to them? What gives them purpose? It’s so important to treat patients as full human beings who have something to offer.”

Further reading:

Q&A: What good doctors do differently

2 comments

  1. Kelli Glaser

    Very sad indeed. She was a very inspirational and authentic person. I hope all who saw her last year at OMED will remember her fondly.

    1. Penelopii

      Never met her or saw her speak in public, but my RT friend introduced me to her. So terrible when the good have to die. And so young and strong

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