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Claire Wineland Cystic fibrosis activist dies at 21

2018-09-04 23:47
Social media star and inspirational speaker, Claire Wineland, has died, just one week after the lung transplant she hoped could boost her life by a few more years. After suffering a massive stroke, Wineland was put on life support, but showed no signs of recovery and passed away on the evening of Sept. 2 with her parents by her side. Wineland had grown up being told by doctors she would most likely not reach beyond her teenage years as she had cystic fibrosis, a degenerative condition largely affecting the lungs. But Wineland refused to be cowed or defined by her illness, becoming a social media star, writer, and speaker in her teenage years with her honest insights into illness and mortality, mixed with a good portion of fun and typical teenage selfies. By the age of 13 she had set up a foundation to help those with cystic fibrosis. Claire's Place Foundation on Monday announced that she had died after a double lung transplant just one week earlier. "She suffered a massive stroke on August 26th after a successful double lung transplant. The stroke was caused by a blood clot. After a week of intensive care and various life saving procedures, it became clear that it was Claire’s time to go." One Red Hot Spark of Inspiration and Joy Wineland was not in any pain, according to the foundation. "The medical staff said it was the most peaceful passing they had ever witnessed." The foundation described Wineland as "one red hot spark of inspiration and joy." "Rest In Peace Sweet Warrior Claire, we will continue where you left off." Writing on social media, where Wineland had amassed hundreds of thousands of followers, they quoted Wineland's own words, "Death is Inevitable. Living a life we can be proud of is something we can control.” Mortality and life were subjects Wineland liked to explore in her social media posts and videos, although a good number were devoted to other kinds of fun. At a TEDx talk in 2017, she said cystic fibrosis helped give her a quality of life. "Life isn't just about being happy. ... It's not about how you feel second to second," she said. "It's about what you're making of your life and whether you can find a deep pride in who you are and what you've given." Cystic fibrosis is a genetic condition with no cure. It creates too much mucus in the organs, predominantly affecting the lungs. 'They Were All $5 Donations' Wineland spent a quarter of her life in the hospital. She had previously rejected the idea of a double lung transplant, which can add years to the lives of people with the disease. But earlier this year, she had a change of heart, and finally was put on the transplant list in May. Faced with potentially huge medical bills for aftercare, Wineland turned to help from her supporters in a tearful, heartfelt video on July 7, asking if people could give to an online crowdfunding site. A week later she posted another tearful video to thank people for their help raising the $200,000 on GoFundMe. "I started sobbing when I saw they were all $5, $10 donations," she said. "That we got to $200,000 with $10 donations, is just mind boggling!" According to the Cystic Fibrosis Foundation, over 30,000 people in the United States, and over 70,000 worldwide have cystic fibrosis. The median survival age is 40.