September 21, 2018

Claire Wineland, YouTube star and cystic fibrosis activist, dead at 21

06 September 2018, 07:26 | Silvia Roy

Claire Wineland: Cystic fibrosis activist dies at 21

Inspirational YouTuber Claire Wineland Dead Following Lung Transplant

The cystic fibrosis activist, who inspired people around the globe with her speeches on illness, mortality, and motivation, underwent a double lung transplant last week. She had more than 200,000 YouTube followers and 94,000 Instagram followers. Claire Wineland suffered a stroke soon after the August 26 transplant, and her family took her off life support Sunday. Claire died peacefully in her hospital bed Sunday at around 6 pm. Cystic fibrosis is a "progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time", according to the Cystic Fibrosis Foundation. It has no cure.

About 30,000 people in the US have CF, a genetic disorder that affects the lungs, pancreas and other organs, according to the Cystic Fibrosis Foundation.

Claire Wineland, an online creator has sadly died at the age of 21.

Diagnosed with cystic fibrosis at birth, Wineland harnessed the power of the internet to spread her message, sharing details of her treatments and day-to-day living, as she lived a full life in spite of the condition. They saw her into this world for her first breath and were with her for her last.

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"When I was born, I had a life expectancy of 5 years old", she said in a September 2015 video.

"Life is not just joy..."

Wineland's health took a turn for the worse in recent months, prompting the double lung transplant. Doctors performed an emergency brain surgery to remove the clot and immediately put her into a medically-induced coma. "Claire's gift is huge, I want your family to know that your daughter is a hero", her mother was told in an email, according to CNN.

Throughout her teens, Wineland's YouTube videos offered an intimate look at her life. "It's not like we walk around like dogs with our tails in between our legs all the time".

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Wineland credited the support of her friends and family with helping her pull through.

"Everyone is always surprised that we go to school, too, and live normal human lives".

Wineland's social media presence made her a much sought speaker, and she traveled widely to give talks and work with her foundation.

What people said about her: "In Claire fashion, she is an organ donor".

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"Claire's corneas and tissue was recovered and she will be able to enhance the life of up to 50 people", a family services specialist wrote in the email. Claire created her own foundation, Claire's Place, which heightens "public awareness about Cystic Fibrosis and improve the quality of life for the families it affects by providing education, life skills, inspiration, and positive support, when she was just 13 years old".

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