Claire Wineland: The 21-Year-Old Cystic Fibrosis Activist No More

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Claire Wineland death is a reminder of the horrific nature of cystic fibrosis and highlights the need for more awareness of the illness

Claire Wineland was born with cystic fibrosis—a genetic disease that causes persistent lung infections—but continued to live a life that was not defined by her disease. She was an inspiration to many, young and old, and did whatever she could to help others. 

As a young millennial who knew the power of the Internet and social media, she used the two mediums to reach out to people and spread awareness about cystic fibrosis. She spoke honestly, shared her truth and quickly rose to the ranks of one of the most influential YouTubing millennials. 

But her inspiring life was short-lived. 

Claire Wineland Death: How The Social Media Star Passed Away  

On September 2, almost a week after undergoing a lung transplant, Wineland, 21, died of a stroke. The news of her demise was announced through a Facebook post

“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,” the post stated.

It added that Claire passed away peacefully surrounded by her family and very close friends.

The California native was also an organ donor.

As her mother told CNN shortly after her death, “Claire was able to save the life of two people: Her right kidney was transplanted to a 44-year-old woman in San Diego, and her left kidney was transplanted to a 55-year-old male in Northern California.”

“Also, Claire’s corneas and tissue were recovered, and she will be able to enhance the life of up to 50 people,” she added.

Wineland Used Her Popularity To Shed Light On Her Disease 

claire wineland death

“Expect that people who live with an illness are gonna be happy about stuff, too,” she said in her YouTube video. | Image courtesy: Facebook/Claire’s Place Foundation

The young Wineland became a social media sensation after she started her YouTube channel documenting her journey through the disease. But instead of wallowing about the horrific nature of her disease, she used her plucky humour to shed light on living a life on the edge. 

She even started Claire’s Place Foundation when she was only 13, with the intention of helping those with the same genetic disorder.  

If you recall, in her 2015 YouTube video titled Tips for Interacting with a Sick Person, she explained, “Everyone is always surprised that we go to school, too, and live normal human lives. When you’re talking to someone who has a disability or has an illness, expect that they live lives like yours.”

“Or, like, that we’re happy. I do get happy about things, and that shouldn’t be a big deal. Expect that people who live with an illness are gonna be happy about stuff, too. It’s not like we walk around like dogs with our tails in between our legs all the time,” she added. 

Windeland always believed in living life to its fullest and her channel and foundation reflected that ideology.

In fact, in a TEDx talk that she gave last year, she shared, “Life isn’t just about being happy….It’s not about how you feel second to second. 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.”

Wineland’s legacy is not lost. Her parents will continue to work towards the cause and run her foundation in the hope that more people are made aware of this deadly disease. 

What Is Cystic Fibrosis?

Claire Wineland death has once again brought the discussion on this disease back to the table.

As per the Cystic Fibrosis Foundation, “In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.” 

Some of the common symptoms of cystic fibrosis is persistent cough, salty-tasting skin, wheezing, poor growth and less weight gain, as well as frequent lung infection. 

Unfortunately, almost 70,000 people around the world suffer from cystic fibrosis. And even though there are treatments such as one that Wineland had (lung transplant), the median age of survival is usually touted as 40. This dismal number makes it even more important for people to know about this disease.

We hope that Wineland’s work towards spreading awareness about it will inspire others to do the same. 

Source: CNN, Chicago Tribune, Cystic Fibrosis Foundation

(Feature & lead image courtesy: Facebook)

Written by

Deepshikha Punj