The cystic fibrosis activist suffered a stroke following a lung transplant.
Claire Wineland became renowned for her positive yet realistic posts about illness and mortality on social media. Claire battled with cystic fibrosis all of her life, but never let it define her. A quarter of her life was spent in the hospital being tended to by a medical team and family; however, she was determined to live a life that mattered and to not be pitied for her illness. At a TEDx Talk last year, Claire spoke about how cystic fibrosis helped give her a quality of life. She highlighted the importance of self-worth when living with a life-shortening illness. Her father credits her with teaching him to “not be afraid of what hasn’t happened yet” and to learn to “love what is.” Her ambitious and optimistic spirit inspired countless people to keep their head up and enjoy the gift of life.
A steep decline in Claire’s health, which robbed her of the energy and ability to do what gave her joy and purpose, led to the decision to have a double lung transplant. The nine-hour surgery was successful, but not long after hope turned to fear. Claire suffered a stroke when a blood clot cut off blood flow to the right side of her brain. Her mom said “Herculean efforts” were made to save her daughter, but it was clear that it was time to let her go. A post on Claire’s Facebook page says: “Our inspirational founder passed away. She was not in any pain and the medical staff said it was the most peaceful passing they had ever witnessed.” Her mom told CNN that Claire’s greatest wish was that “her foundation will live on, even in her absence.” The impact Claire had will undoubtedly continue to touch thousands of lives.
Cystic fibrosis is a genetic condition with no known cure. The progressive disease creates too much mucus in the lungs and other organs, which traps infections and blocks airways in the lungs. The digestive system, pancreas, and other organs are also affected, leading to respiratory failure. The US-based Cystic Fibrosis Foundation says more than 30,000 people in the United States and more than 70,000 people worldwide live with this condition. The survival rate has greatly improved since the 1950’s when living long enough to attend elementary school was rare. Breathing treatments for hours each day can help with symptoms and a double-lung transplant, when successful, can add years to a patient’s life. Claire state’s in her last social post, “Go enjoy your life. Really. I mean that seriously. Go enjoy it, cause there are people fighting like hell for it.” Claire’s message will continue to prevail and her life will never be forgotten. The family intends to honor her memory by continuing to advance Claire’s Place Foundation, which she established to support others affected by the disease.
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