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CNN Article: Our Founder, Claire Wineland, dies one week after lung transplant

September 4, 2018

Claire Wineland; Photograph by Larissa Perroux

Claire Wineland, inspirational speaker and social media star, dies one week after lung transplant
By Jessica Ravitz, CNN

Cystic fibrosis did not define Claire Wineland. She did.

No matter the obstacles placed in front of her, of which there were many, she refused to be pitied and was determined to live a life that mattered. She inspired countless people, invited — no, demanded — honest talk about illness and mortality, and brightened the worlds of those she touched with her smile, spunk and spirit.

On Sunday evening, after being taken off life support and using the newly transplanted lungs she received just one week earlier, Claire took her last breath. The cause of death was a massive stroke she suffered soon after the transplant surgery. She was 21.

‘Love what is’

A quarter of Claire’s life was spent in the hospital. The medical team that tended to her became family. She played hide-and-seek with nurses and left explosions of glitter in her wake. She watched one of her doctors squirm as he gave her the safe-sex talk. She took great care to decorate her hospital room so it felt and looked like home.

Her parents, Melissa Nordquist Yeager and John Wineland, split up when Claire was 3, but they remained friends and partners in her care.

Her father credits Claire with teaching him “to not be afraid of what hasn’t happened yet” and to learn to “love what is.”

Yeager, who lost and quit jobs as hospital stays dictated, always marveled at her daughter’s aura and her ability to lift up those around her.

In 2017, Yeager recalled a conversation with Claire about death. At one point, Claire looked at her mom and said, “After you die, you’re closer to everyone you love because you’re part of everything,” Yeager remembered.

These words were a gift, a reminder that Claire would remain with her always, even after she was gone.

Trusting Claire

More than 30,000 people in the United States, more than 70,000 worldwide, have cystic fibrosis, according to the Cystic Fibrosis Foundation. The median survival age is 40, the foundation reports, which is a great improvement from the 1950s, when surviving long enough to attend elementary school was rare.

Claire Wineland spent a quarter of her life in the hospital.

The genetic and progressive disease creates an overabundance of mucus, which traps infections and blocks airways in the lungs. It also complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure.

There is no cure, but dutiful breathing treatments — which eat up hours each day — can help with symptoms and complications. A double-lung transplant, when successful, can add years to a patient’s life.

Claire’s parents learned to trust their independent and strong-willed daughter. When it came to her care, she knew her body best — what worked for her, what didn’t and how far she was willing to go.

So when she became a legal adult and told them she had no intention of getting a double-lung transplant, they had to accept her decision, even if it pained them.

“I had to be honest,” she once explained. “It’s not for me and never has been.”

A change of heart

Claire took the gift of life and her health seriously, but she didn’t take herself too seriously. She once escaped from the hospital so she could attend a Bernie Sanders rally. She laughed at the absurdities that often swirled around her, including those moments in the produce aisle at Whole Foods when shoppers would prescribe her unsolicited “cures,” telling her to eat more pineapple or that a mushroom cleanse would take care of everything.

Claire Wineland’s greatest wish, her mother said, was that “her foundation will live on, even in her absence.”

She was of the mind that she would leave this world with the body she came in with. She’d travel, answer calls for speaking engagements and put energy into her foundation, which she set up at age 13 after coming out of a 16-day medically induced coma. She’d work on a book — promising it wouldn’t be “another happy sick person book” — and appreciate the small things like swims in the ocean for as long as she was able.

At a TEDx talk she gave last year, Claire made a point of saying how 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.”

Claire had a change of heart about transplant earlier this year, prompted by a steep decline in her health that robbed her of the energy and ability to do what gave her joy and purpose. She wasn’t done contributing. It was a welcome, albeit terrifying, development for those who loved her.

To get on the list for new lungs, she had to be sick enough to need them, yet strong enough to withstand the surgery and recovery. Some people worried that she’d waited too long and wouldn’t be given the chance at continued life.

But Claire took on the evaluation process to get on the list with laser focus. She sat in an educational meeting at UC San Diego Health’s transplant center and diligently took notes.

Revealed on her left ankle was a tattoo: the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy.”

She listened to the risks and the long list of side effects and emerged unfazed.

“None of it spooked me,” Claire said afterward. “Now that I’m looking at it as something I have to do … I’m willing to deal with anything.”

‘It’s a GO!!!’

In late May, she made the list and shared the exciting news with her social media followers who dot the globe. But then, a mix of health and life complications took a toll and knocked her off the list, temporarily. By mid-August, she was back on and feeling ready.

Claire and her mother beamed in a photo posted on social media after they learned her transplant was a go.

She’d worked hard to get there, was focused on her self-care and getting stronger. She joked that the squats she was doing, upon doctor’s orders, would help get her more than lungs. She’d also get a butt.

She knew that the call could come at any minute, and on August 26, it did.
“It’s a GO!!!” she posted on Twitter, not long before she was wheeled into the operating room in San Diego. “See y’all on [the] other side.”

The nine-hour surgery went well, and her mother reported that the lungs were working great. Yeager posted a video of herself doing a happy dance with friends in the waiting room.

But not long after the successful surgery, hope turned to fear. Claire suffered a stroke when a blood clot cut off blood flow to the right side of her brain. She never emerged from her medically induced coma. Despite emergency surgeries, and what her mother described as “Herculean efforts” to try to save her, the daughter she knew was gone. Given the severity of the stroke and Claire’s advance directive, it became clear that it was time to let her go. She passed away peacefully, with her parents by her side.

“They saw her into this world for her first breath and were with her for her last,” Laura McHolm, the board chair for Claire’s foundation, wrote in a Facebook post.

Last night at 6:00pm, Claire Wineland our inspirational founder passed away. She was not in any pain and the medical…

Posted by Claire's Place Foundation, Inc. on Monday, September 3, 2018

Less than 3% of lung transplant recipients have a stroke between the surgery and hospital discharge, according to the United Network for Organ Sharing, which operates the nation’s organ transplant system.
Claire, who understood the importance of organ donation, was a donor herself. On Monday afternoon, her mother received word that Claire had already made a difference.

“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 was recovered and she will be able to enhance the life of up to 50 people,” a family services specialist wrote to Yeager in an email message. “Claire’s gift is huge, I want your family to know that your daughter is a hero.”

The family intends to honor her memory by continuing to advance Claire’s Place Foundation, which she established to financially support others affected by her lifelong disease.

‘Go enjoy it’

In one of the last videos Claire posted, she went where she hadn’t before.
A self-described “goofball,” she usually engaged people with humor and optimism. This time, she was raw and allowed herself to cry. As she faced the prospect of getting a double-lung transplant, she understood how desperate she was to live — and give — more.

“It hurts everything inside of me to make this video,” she said into the camera. “I didn’t realize how much I didn’t expect to live this long. I didn’t expect to have a chance. … The years of telling myself I can do it on my own are over.”

She had plenty of emotional support, but she worried what transplant surgery might mean for her future and her parents’ future if it didn’t go well. What if they poured everything into her transplant, and she didn’t make it or was not able to work again, she explained later. She needed financial help. By asking for it, she said, she could relax and get in the headspace for whatever would come next.

Before signing off, Claire implored viewers to do one thing.

“Go enjoy your life. Really. I mean that seriously,” she said with her signature smile and laugh, her eyes not yet dry. “Go enjoy it, ’cause there are people fighting like hell for it.”

FULL ARTICLE on CNN.com

Press

Our Founder, Claire Wineland, dies one week after lung transplant

September 3, 2018

Claire Wineland
Photograph by Larissa Perroux

Last night at 6:00pm, Claire Wineland 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.

She was surrounded by love and with her mother Melissa Yeager and father John Wineland; they saw her into this world for her first breath and were with her for her last.

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.

Yesterday, Claire’s family and a few very close friends came to say their final farewells and offer their support to the family.

In Claire fashion, she is an organ donor. Claire’s remarkable family were so happy for the other families that were now getting the calls that the organ they had long been waiting for was now available for transplant. They had been on the receiving end of that call just one short week ago.

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 of love.

We are asking to please give the family privacy at this time. They have so generously shared their lovely Claire’s remarkable journey with us all, but now is the time to give them some peace from the public spotlight. They will emerge eventually, but please give them the time to come to terms with their family member’s passing.

In lieu of flowers, the family is asking for donations to be made to Claire’s foundation.

Claire’s Place Foundation is committed to upholding Claire’s legacy by assisting Cystic Fibrosis families in need.

In the words of our precious founder Claire Wineland: “Death is Inevitable. Living a life we can be proud of is something we can control.”

You sure made the whole world proud of you Claire!

She was one red hot spark of inspiration and joy, wasn’t she? Rest In Peace Sweet Warrior Claire, we will continue where you left off.

Hug your loved ones close,
Laura

Laura McHolm
Chairman of the Board
Claire’s Place Foundation
Photo Credit: Larissa Perroux

FULL POST on Facebook.com

Press

Claire’s Place Foundation’s Founder wins Glamour Magazine’s College Woman of the Year Grand Prize

June 12, 2018

What an incredible honor ~  Thank you Glamour Magazine for recognizing our Founder Claire Wineland as your Glamour College Women of the Year Grand Prize Winner!  The $10,000 grant will help Claire continue her efforts to support her cystic fibrosis community by providing financial and emotional support to those living with this disease and their families. Read on to find out more about these amazing and inspiring 2018 winners!

Meet Glamour’s 2018 College Women of the Year
BY JESSICA MILITARE
JUNE 4, 2018 8:00 AM

What were you doing in college? Trying to solve hunger? Researching the effects of the 2010 BP oil spill? Trying to rewrite the narrative around revenge porn? I know I wasn’t doing any of that. But I know a few people under 23 who are.
I’ve worked on Glamour’s College Women of the Year competition for three years—in which for over six decades we’ve honored students across the country making a difference on their campuses and beyond. Alums of CWOTY, as we call it, have gone on to become renowned businesswomen (ahem, Martha Stewart, class of 1961), championship-winning athletes, and elected officials. But what’s amazing about these students is that they don’t wait for anyone to give them permission to make change; they’re getting things done now, and on their terms. You might think that with each passing year, I’d feel more depressed about what I haven’t yet accomplished compared with these trailblazers. But really, I feel unbelievably hopeful and excited knowing that the future is in their hands.
This year’s class of winners is no different. Read their inspiring stories ahead and what motivates them to keep going.

PHOTO: ANNA ZHANG
Amanda Gorman, 20, Harvard University
TV was limited in the Gorman household, so Amanda and her twin sister got creative: She started writing poetry at age eight, and they’d put on musicals to entertain themselves. “I was an artist and a creator from a young age because I had to be,” Gorman says. But at school kids pointed out that Gorman talked and sounded different because of her speech impediment. “I just told them I was born this way,” she says. “Now experiencing that type of discrimination makes me take pride in having a marginalized voice.”
Today the sociology major is the first-ever Youth Poet Laureate of the U.S. and has read her work at the Library of Congress and on MTV (Hillary Clinton and actress Cynthia Erivo are fans). Her poem “In This Place (An American Lyric)” was acquired by the Morgan Library and Museum in New York City, where it’s on display alongside works by Elizabeth Bishop. Take that, haters.
Inbetween touring the country to read her poetry (one of her recent gigs was performing a poem at an event honoring Lin-Manuel Miranda and Dick Van Dyke at L.A.’s Geffen Playhouse), she runs One Pen One Page, her literary organization that provides free creative resources from students in America and around the world. No pressure, but Gorman also wants to run for president one day.
“It’s not that I want to run; it’s that I’m going to run,” she says. “Seeing the ways that I as a young black woman can inspire people is something I want to continue in politics. I don’t want to just speak works; I want to turn them into realities and actions.”

PHOTO: BRANDON Y LEE
Ann Makosinski, 20, University of British Columbia
Ann Makosinski was inventing from a young age: She’d piece together garbage with hot glue, and play with transistors. She’d devour biographies about science icons like Marie Curie and Albert Einstein. “I even renamed myself Andini, after Harry Houdini,” she says, after she read a book about the famous magician in the fifth grade. She actually prefers to go by that name. “His performance style inspired me when I started presenting at science fairs,” she says.
That same curiosity carried into her teens: When she was 15, Makosinski learned that a friend in the Philippines failed a grade because she didn’t have electricity to keep the lights on to study. So she invented a flashlight that runs on the heat of the human hand, no batteries needed. It uses thermoelectric generators—otherwise known as Peltier tiles—to work with body heat to produce light. She won the Google Science Fair in her category for that invention and is now aiming to bring her idea to market through her own company, Makotronics Enterprises. Meanwhile, she keeps dreaming up other ideas like her eDrink prototype, which converts excess heat from coffee into electricity to charge a cell phone. Makosinski travels the world speaking to kids about electronics and is hell-bent on redefining what an inventor looks like.
“The portrait of an inventor in the media is usually a guy hunched over tinkering in a big fancy lab,” she says. “I’m not that. I want kids and young girls to see me and think, Hey, if someone just like me made something, maybe I can make something too.”

PHOTO: LUCY HEWETT; MAKEUP: JENNA BALTES
Bushra Amiwala, 20, DePaul University
After the 2016 presidential inauguration, Bushra Amiwala, who interned for Illinois Republican Senator Mark Kirk was invited to speak to a class of first through third-graders at a Muslim education center about getting involved in politics. She asked them: “How many of you want to run for president one day?”
“All of them raised their hands,” she says. “But when I followed up with: ‘How many of you think you can run for president one day?’ all of their hands dropped. I realized that if I ran, these are the students I’d be impacting. They’d see my candidacy and be like, ‘I can also run.'”
Amiwala realized that all of the issues she wanted to work on in her hometown of Skokie, Illinois—hunger, homelessness, education—could be tackled at the local level. So last year she built a team of 250 volunteers and became the first Muslim American woman and youngest person ever to run for a commissioner seat on the Cook County Board, against the male incumbent. She lost in March but registered more than 2,000 people to vote, and 30 percent of her votes came from people who voted for the first time. “My campaign was more than just getting elected,” she says. “It was a movement of people who’ve been neglected in politics banding together to push back.” Now she’s starting an organization to help minorities run for office. Her message to women running in the midterms?
“You can do this,” she says. “You’re going to have hundreds of people tell you that you can’t, but you’ll also have thousands of people tell you that you can, just not as loud. The support is there, you just have to find it. Believe in yourself first.”

PHOTO: LARISSA PEROUX
Claire Wineland, 21, Santa Monica College
Claire Wineland has a ritual every time she checks in to the hospital room she’s occupied on and off since she was four: She rearranges the furniture and plasters the walls in butcher paper. Sometimes she paints bricks to make the room look like a loft.
Wineland has cystic fibrosis, a genetic disease that produces an overload of mucus in the body and affects most of her organs. It’s hard work just to stay alive: She does five hours of breathing treatments a day and takes nearly 50 medications. Her life expectancy is her midtwenties, and she’s now 21.
“You’re on this constant stop-start where you start living your life and then you have to get plucked out of it and go to the hospital for a few weeks, which makes it hard to have anything that’s grounded,” Wineland says.
Two days after her thirteenth birthday, Wineland had a near-death experience: After a routine surgery she got a blood infection and her lungs collapsed. For nearly six hours she was awake while dying. “I got this feeling of grief; I was sad for all of the things that I could have done and the person I could have become,” she says.
Wineland was put in a medically induced coma for three weeks, and after coming out of it, she had a huge support system around her. But she noticed many other sick kids and their families didn’t have as much help. She started Claire’s Place, a foundation to support people with CF and their families, including covering costly medical bills, rent, or breathing equipment. To date she’s aided more than 100 people with CF. And on YouTube she challenges stereotypes about terminal illness (see her millions-viewed videos “What It’s Like to Be in a Coma,” and “Dying 101”). She was recently approved for a lung transplant, a crucial surgery for young adults with her disease.
“Everything I’m proud of comes from some of the darkest things in my life,” Wineland says. “My purpose is to help more people feel comfortable with their pain and realize that they have a lot of power and a lot to give regardless of whether their life seems normal or not.”

PHOTO: KELIEE YU
Keiana Cavé, 20, University of Michigan
After the 2010 BP oil spill, Keiana Cavé, then 16 years old and living in New Orleans, noticed something missing from the news coverage around the environmental disaster. “I remember googling, ‘What’s happening between the UV rays from the sun and the oil sitting on top of the ocean? What’s actually going into the sea water?'” she says. “Nothing came up.”
Cavé ended up contacting 30 professors at area colleges about her desire to research the spill. One at Tulane University answered, and Cavé dived into working there. Her research ­revealed that cancer-­causing molecules had developed in the water less than 12 hours after the spill. The accolades followed: She won second place in the earth and environmental sciences category at the Intel International Science and Engineering Fair. And after winning first place at MIT’s Global Entrepreneurship Bootcamp, Chevron caught on to her work; they gave her a $1.2 million grant to start a lab at U of M, where she’s developing an oil dispersant to detect and neutralize toxic agents.
The Forbes 30 Under 30 for Energy recipient would like to solve other problems too: the global water crisis, for one. She wants to serve as CEO for a major energy company, and empower other women in STEM. “I want to be a fixer, like the Olivia Pope of science,” she says. “If anyone has a major issue, I want to find solutions for it.”

PHOTO: CHLOE CICCONE
Leah Juliett, 21, Western Connecticut State University
At 15, Leah Juliett had just come out as a lesbian when a boy at their high school posted nude photos of Juliett on the Internet. “I was coming to terms with my sexuality, and then I saw all of the things I wanted to accomplish disintegrate around me,” Juliett says. They fell into a deep depression and pattern of self-harm, but after healing and sharing their story at poetry slams, they wanted to prevent a similar experience from happening to others.
Juliett went on to start the March Against Revenge Porn, a cyber civil rights campaign that advocates for Internet safety, especially for LGBTQ people, federal lobbying, and cyber sex education. They are currently working on legislation in Connecticut that would make revenge porn a more punishable crime.
Last year Juliett held the March Against Revenge Porn in Brooklyn. A few months later New York State voted in successfully criminalizing revenge porn. “Our efforts put revenge porn on the minds of legislators and made a difference,” Juliett says. This year Juliett has more marches planned: In Boston and Pittsburgh this month, and one at the University of Hawaii in October.
This month Juliett, who came out as nonbinary in college and uses they/them/their pronouns, founded the National LGBTQ+ Youth Town Hall, a grassroots political mobilization campaign event for voting-age queer and trans youth to interact with politicians. And they’re sharpening their political chops, having interned for Senator Chris Murphy and Congresswoman Elizabeth Esty. Says Juliett: “I want to be the first nonbinary senator of the United States.”

PHOTO: AP PHOTO/RICHARD DREW

Simone Askew, 21, United States Military Academy
Simone Askew went to Army-Navy football games as a kid in Virginia with her mom and sister and was fascinated by the cadets leading in formation. Her favorite part was when the midshipmen would march onto the field at the beginning of the game. “It sparked an interest in the discipline and the order of those march-ons,” she says.
As a teen, Askew was eager to go to the Academy; she even missed getting crowned homecoming queen to attend a West Point recruiting event. As a student there she’s made history: Last year Askew was chosen as the first African American woman to serve as First Captain of the U.S. Military Academy’s Corps of Cadets, the highest-ranking student post, overseeing 4,400 students. As a survivor of sexual assault, one of her missions as First Captain has been changing the approach to assault and prevention at West Point.
“I’ve pushed our education toward showing cadets what respectful relationships and behavior looks like, not just [telling cadets] don’t assault and don’t harass people,” she says.
Askew graduated in May, but next on her very impressive agenda: Attending Oxford University in the fall as a Rhodes Scholar where she’ll study refugee and forced migration. Later she wants to enter the Army’s Corps of Engineers.
“I want to serve as long as the army will have me,” she says, “and lead with a purpose and lead honorably wherever I am.”

PHOTO: DOUG DUBOIS
Zahra Arabzada, 22, Hobart and William Smith Colleges
When Zahra Arabzada was growing up in Taliban-ruled Afghanistan, girls weren’t allowed to play sports. But her parents sent her to school, and when she was 10, she got the chance to run her first three-kilometer race in another province; she ran it in flip-flops. “At the end of the race, I said, ‘I’m never doing this again.’ I was so sore,” she says.
Through hard work Arabazada got accepted to the first female boarding school in Afghanistan and later landed a scholarship to a Rhode Island boarding school. It was there that she fell in love with cross-country, but was wary to run because no one else looked like her. Arabzada changed her mind when she went back to Afghanistan and was explaining the foreign concept of running to her mother. “It seemed like she wished that she could have this escape and I recognized my privilege,” Arabzada says. “How I dress shouldn’t stop me, because my mom would die to have this opportunity.”
She put herself all in: Arabzada’s now tackled three half-marathons, one trail marathon, and a 50-mile ultra-marathon, all chronicled on her blog, The Hijabi Runner. There she writes about what it’s like to fast and train, and about her life back in Afghanistan. She also mentors a running team there through Free to Run, an organization that uses sports to empower women and girls in conflict-affected regions. Her goal?
“I hope my story helps another Muslim woman to go for even a one-kilometer run.”

PHOTO: ESLAH ATTAR; HAIR AND MAKEUP: VICTORIA STILES
Maria Rose Belding, 22, American University
Volunteering in food pantries her whole life, Maria Rose Belding, who has diabetes, saw processed food available but very few fruits and vege­tables. “One time we got a donation of 10,000 boxes of macaroni and cheese,” she says. “We were making phone call after phone call and sending emails to try to find a place that could take this extra food. I remember saying, ‘We have the Internet—why haven’t we solved this?’” Then she noticed local restaurants and markets throwing away healthy perishables.
So at 15 she launched MEANS (Matching Excess and Need for Stability) Database, a nonprofit and communication platform that alerts food banks and pantries when food that would have been tossed is available. To date, MEANS has recovered and distributed over 1.7 million pounds of food and is active in 49 states. Puerto Rico is next on their list. Belding keeps the stories of MEANS’ partners close to her heart: the food pantry they serve that operates without running water; the elderly woman who runs a pantry out of her church. What does she want to say to anyone who doubts her ability to help solve hunger?
“Come to work with me and I’ll show you otherwise,” Belding says. “There’s so much astronomical need that, realistically, we’re not going to make food insecurity disappear. But that doesn’t mean we can’t move the ball down the field.”

PHOTO: JOEY ROULETTE
Karen Caudillo, 22, University of Central Florida
Karen Caudillo remembers the salsa-music parties her Mexican father threw in Florida, where she grew up. But when she watches home videos now, she can count who’s been de­ported.
“[It was] moms, dads, grandparents, sisters, brothers, boyfriends, girlfriends,” she recalls. “Right now it’s a time for people to come out of the shadows. All we want is to be treated equally and with respect and dignity.”
“Even to this day I’m scared of my phone dying because sometimes I think it might be my mom or my dad, detained for no reason,” she says. That’s why she’s out there fighting for her family and for others: The DACA recipient and activist fasted outside the U.S. Capitol last year for four days with United We Dream, trying to get lawmakers to pass a DREAM Act; a C-SPAN video of press interviewing her afterward got 11.8 million views. Now Caudillo is working to pass legislation as a student senator to make UCF safer for other Dreamers, while also advocating for farm worker and immigrant rights in Florida.
“Hopefully, we see a DREAM Act passed sooner than later,” she says. “We’re still living in limbo, but we’re still actively fighting, and one day we will see a pathway to citizenship for the 11 million undocumented folks living in the U.S.”
Read what the Glamour 2018 College Women of the Year think about activism, the Me Too movement, and the pressure to achieve.

 

 

 

Press

CNN Article: Our Founder, Claire Wineland, has a change of heart regarding transplant

May 24, 2018

Are you one of the many young adults or children living with cystic fibrosis and have begun the painful decline that this disease can sometimes bring about?  Our Founder, Claire Wineland, has recently done much soul searching and has decided to try for a double lung transplant.  For many years, she was adamantly opposed to it until her world became so small due to her quick decline.  We would like to thank Jessica Ravitz, a wonderful, warm and loving writer with CNN for following our journey through this process.  We hope that it helps those of you trying to make this very difficult decision.

FULL ARTICLE on CNN.com

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She sits in front of UC San Diego Health after going to a series of evaluations. PHOTOGRAPH BY MONICA ALMEIDA

Claire Wineland vowed that she wouldn’t have a lung transplant, but her decline from cystic fibrosis made her reconsider.

Why a terminally ill young woman has changed her mind about living
By Jessica Ravitz, CNN
Photographs by Monica Almeida for CNN

La Jolla, California (CNN)To face each day, Claire Wineland undergoes hours of breathing treatments. It’s a reality of living with cystic fibrosis she’s come to accept.

But last month, as the nebulizer hummed loudly in her La Jolla, California, hotel room, she breathed in medicine through her mask and hoped this day would be the first step toward something different.
She’d traveled from Los Angeles with her mother, her best friend and her pit bull, Daisy, who flopped down on the floor atop one of Claire’s ever-present oxygen tubes. A full day of appointments at a nearby medical center awaited her, when she would begin the evaluation process to see whether she might be a candidate for a double-lung transplant.
A year earlier, Claire vowed that she’d never have the major surgery.
“It’s not for me and never has been,” she said at the time.
She was more comfortable dealing with the illness she knew than taking on the unknown. She preferred to focus on leading a purposeful life than worrying about death and how to dodge it.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She sits in her hotel room with dog Daisy before going to UC San Diego Health for consultations. PHOTOGRAPH BY MONICA ALMEIDA

A series of irreversible setbacks and some painful soul-searching, however, have prompted an about-face in her thinking. Claire, 21, needs new lungs, or she will die — sooner than she’s willing to accept.
The only question is: Did her change of heart come too late?
Feeling trapped

It wasn’t as if the clouds parted and she suddenly saw the light. Claire’s new outlook was the result of a messy and humbling self-reckoning.
She had long managed to push through physical discomfort to lead a life that mattered. After emerging from a 16-day medically induced coma at age 13, she envisioned the Claire’s Place Foundation, which today provides financial support to struggling families affected by cystic fibrosis. She appeared in brutally honest viral videos in which she talked about topics like death and did it with a smile. Since she was 14, she had been taking to stages and wowing audiences with beyond-her-years wisdom. Along the way, she nurtured a love of travel.
She was wrapping up a three-city tour last fall when pneumonia landed her in a Philadelphia hospital for two weeks.
Doctors there sat her down and told Claire she had to stop flying. Period. They told her that her lungs could collapse and that she ran the risk of dropping dead on a plane, she said. They warned that it would be painful and laid out what it would feel like if an air pocket in her lungs burst.
“You will feel like you’re being stabbed to death … and then blood will stop flowing to your brain,” she remembered them saying. “And I was like, ‘OK, I got the message! Copy that!’ “
She took a three-day train ride home and began to settle down.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She reveals a port for a feeding tube, while in her hotel room before going to to UC San Diego Health for consultations. PHOTOGRAPH BY MONICA ALMEIDA

Cystic fibrosis affects more than 30,000 people in the United States (and more than 70,000 worldwide), according to the Cystic Fibrosis Foundation. The disease causes an overabundance of mucus, which traps infections and blocks airways in the lungs, complicates digestion, affects the pancreas and other organs and, eventually, leads to respiratory failure.

Read: Living while dying: ‘Little Buddha’ wisdom from a terminally ill ‘goofball’
The median survival age is about 40, according to the foundation — a great improvement from the 1950s, when surviving long enough to attend elementary school was rare.
Claire became uber-diligent with her care. She was on top of her dozens of medications, including her shots for cystic fibrosis-related diabetes, endured as best she could the feeding tube at night, even though it made her throw up, and spent extra time with her breathing treatments. For four hours daily, she said, she wore a vest to shake her lungs and loosen mucus. She also tried supplements like turmeric and found comfort in the nettle infusions she drank throughout the day.
But even with all of this, her lung function continued to decline. In one year, she said her working lung capacity fell 10 points — from 35% to 25%. Short walks and visits to the beach left this lover of the outdoors exhausted. Simple grocery shopping became too tough to manage. She had no energy for local speaking engagements and lost her income flow. She felt homebound, trapped and unable to do what mattered to her most.
CFers, as she refers to people with cystic fibrosis, often talk about “the Wheelchair Decision” with dread, Claire said. But when breathing and getting around became too difficult and she got hers in February, it initially felt “like freedom.”
With her best friend, Larissa, taking on the role of “designated wheeler,” the duo could tool around outside. The day she got the wheelchair, they went on a seven-hour adventure around Los Angeles’ Venice Beach, where Claire lives, visiting the canals, going to the park, soaking in the ocean breeze.
And while most of the time, she has no qualms about needing a wheelchair, there are accessibility issues, the sidewalks are a mess, and she can’t be pushed through sand. Inevitably, she’s had those moments when she thinks, “It sucks that I need this. It’s painful that it’s gotten this far.”

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. A friend cups her hands to pound Clair’s chest, a practice known as chest physical therapy, CPT, which helps clear the airways, in her hotel room before going to to UC San Diego Health for consultations. PHOTOGRAPH BY MONICA ALMEIDA

Claire breathes in medicine through a nebulizer as Larissa pounds her back with cupped hands to help loosen mucus in her airways.

Then Claire, who’s undergone more than 30 surgeries and been in the hospital a quarter of her life, received another jolt during a March hospital stay. Medical staff discovered that her portacath wasn’t working. The small dome under the skin of her chest provides a central line into a vein, allowing easy administration of IV treatments — such as antibiotics, which she must take regularly to beat back constant infections. A portacath replacement means surgery, and Claire’s pulmonary function was — and remains — at a level too dangerous for her to go under anesthesia.
Though the portacath was fixable, Claire didn’t know it would be at the time. A wave of terror washed over her. She fell apart and realized it was time to take the transplant idea seriously.
“I can’t go under anesthesia. I can’t fly. I can’t do anything,” she remembered feeling with a panic. “I have completely locked myself in a position of not being able to do anything besides die.”

Ready for the race

After leaving the La Jolla hotel, Claire was wheeled into the Center for Transplantation at UC San Diego Health, prepared to meet with members of the lung transplant team.
She’d eaten a McDonald’s McGriddle sandwich the day before — a secret she employs to put on an extra pound or two before weigh-ins — just in case they asked her and her 95-pound frame to step on a scale. She was armed with questions and a notepad, ready to studiously record all she’d learn. Since she’d been here less than two years earlier and decided against pursuing the transplant path then, she was eager to tell them why this time was different.

A nurse who serves as the lung transplant coordinator, Megan Serletti, spent several hours educating Claire, her mom and Larissa about the process.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She goes to her first appointment with mother Melissa Nordquist Yeager and Megan Serletti, BSN, RN at UC San Diego Health before appointments for consultations. PHOTOGRAPH BY MONICA ALMEIDA

They talked about the battery of tests that would determine whether she would qualify to get on the waiting list, some of which Claire knew well and described as “gnarly.” They discussed the lung allocation score, the number Claire will get if she’s approved that measures how sick she is and determines where she sits on the priority list.

They discussed what life on a waitlist looks like: the necessity that she stay within a four-hour drive of the center, the importance of not ignoring phone calls, the exercise she’d need to grow stronger and the multitude of blood draws and exams she’d have on her schedule.
“We call a transplant your marathon,” Serletti said. “We tell people to train for your marathon. The day you get called is the day of the race.”
There were forms to sign and questions she’d need to consider. For example, would she be willing to accept lungs from a prostitute?
“I’m fine if a donor had sex in exchange for money,” Claire quipped. “Way to bring the hustle.”
How about from someone who was an IV drug user and contracted hepatitis C, a condition that is treatable?
“Honestly, I’d just laugh if I got new lungs and caught something else,” she said. “I already have the body of someone who’s been around the block.”
Serletti spoke of the realities after surgery, including the drugs Claire would need to take for the rest of her life, the physical and emotional challenges she might face, the changes in lifestyle she’d have to honor.
Claire wrote everything down. She curled her legs into the chair, revealing the tattoo on her left ankle: the thumbs-up “Don’t Panic” logo from “The Hitchhiker’s Guide to the Galaxy.”
“None of it spooked me,” Claire said afterward, over lunch in the transplantation center’s courtyard. “Now that I’m looking at it as something I have to do, I don’t care about any of the side effects. I’m willing to deal with anything.”

‘We both just started crying’

To qualify for new lungs, a person must be sick enough to need a transplant yet strong enough to withstand the surgery and recovery.
There were 1,436 candidates for lung transplants as of April 20, according to the United Network for Organ Sharing, which manages the nation’s organ waiting lists. Of those, 122 had a primary diagnosis of cystic fibrosis. Last year, of the total 2,449 lung transplants performed, CFers accounted for nearly 11% of the recipients.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She and her mother Melissa Nordquist Yeager, attend a Lung Transplant Education session with Megan Serletti BSN, RN at UC San Diego Health. PHOTOGRAPH BY MONICA ALMEIDA

A lung transplant is not a cure, but it can extend a life, if all goes well.
Of those who received lung transplants (not just CFers), dating to 2000, an average of 84% survived after one year, nearly 54% survived five years, and slightly more than 30% survived 10 years or more, according to the organ sharing network’s data.
Deciding to go for a lung transplant, let alone a double-lung transplant (the only option for CFers), is no small matter.
Claire first visited a transplantation center at UCLA when she was 14 but said that was too early for the idea to make sense for her. At 17, she checked out the program at Stanford University but was turned down, her mom explained, because they could tell that Claire wasn’t interested. She checked out the option again, at the very place she had returned to now, when she was 19.
While her peers were being tasked with picking out prom dresses or decorating dorm rooms, she was being asked to contemplate her mortality.
She prayed that she’d want it as much as she knew her parents and doctors did, but her heart wasn’t in it, she said. She was still happy with what she had and, as an adult, able to make her own decisions.
Her parents, who split up when Claire was 3, struggled to make peace with her choice.
“Just think of it as insurance, even if you don’t want to do it,” her mother, Melissa Nordquist Yeager, pleaded at first. “Get on the list so you can change your mind.”
But ever since she’d been a small child, Claire had a sense of self, an understanding of her condition and a sort of intuition Yeager needed to trust — even if it made her uncomfortable.
Her dad, John Wineland, said Claire “has a relationship with her body that is sacred” and described his daughter’s thinking: “This is the body I came in with. This is the body I’m going out with.”
And as her parent, he said, “I have to live with it.”

Claire was born with cystic fibrosis and has spent a quarter of her life in the hospital. (Family Photo)

To see her struggle and deteriorate over the past year was both sobering and excruciating for them. So when Claire broke down and said she’d changed her mind, they were thrilled, excited and terrified.
“I was blown away, so grateful, happy and hopeful. It was a sign that she wasn’t willing to give up,” remembered Yeager, who was with Claire at the hospital in March and heard the news first.
“I called her dad, and we both just started crying,” Yeager said.
“I’m just praying my ass off, really, that everything goes smoothly, that she can get a shot at more time on the planet,” Claire’s dad said. “There are a lot of hoops she has to jump through to be accepted.”

‘Are you ready?’

It’s not uncommon for CFers to change their minds about transplant, social worker Leslie Fijolek assured Claire.
Fijolek, who serves on the transplant team, remembered Claire from the last time she visited UC San Diego Health. Fijolek’s job is to think about “who are these [new] lungs going to live with,” she said, get a sense of the care system recipients have in place and provide support to make the process successful for everyone involved.
Is Claire compliant in taking her medications? Is she prepared to relocate near the transplantation center, where she’ll need to be for at least three months after the transplant if she gets one? Who’d move with her and drive her to appointments?
“How’s your mood been? Any depression and anxiety?” Fijolek asked.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She and her mother Melissa Nordquist Yeager, attend a psychological evaluation with Leslie Fijolek LCSW, a clinical social worker, at UC San Diego Health. PHOTOGRAPH BY MONICA ALMEIDA

Claire mentioned how her decline, starting last fall, threw her into a depression. They talked about how she’d lost the ability to manage her physical decline, how she’d like to find a therapist who works with patients facing chronic illness, how she turns to arts and crafts projects to get out of bed — and out of her head — on rough days.
Photos on a cell phone are passed around, showing the papier-mache tree she’s been working on and how the bark and surrounding foliage are remarkably true to life.
Fijolek turned serious, locked eyes with Claire and said what everyone in the room already understood: “You know you need a transplant.”
“I was so young. I was so naïve,” Claire answered, describing where she was before. “All the side effects used to scare the shit out of me. My relationship to transplant and all it entails has changed.”
Fijolek, who was all too familiar with Claire’s past ambivalence, pushed her further.
“Let’s say you got listed in about two weeks; it means you can get a call at any time,” she said. “Are you ready?”
Claire assured her she is.
“It’s a big change from where you were,” the social worker said.
“I didn’t want to waste anyone’s time,” Claire answered.
Her mother sat by, fanning herself with a medical brochure, listened and wiped a tear from her eye.

 

All she had

The last appointment of the day was with one of the transplant team’s pulmonologists.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She and her mother Melissa Nordquist Yeager, meet with Dr. Kamyar Afshar DO at UC San Diego Health. PHOTOGRAPH BY MONICA ALMEIDA

Dr. Kamyar Afshar explains the importance of Claire building her strength so she can handle the transplant, if she’s given one.
Dr. Kamyar Afshar got down to the nitty gritty. He wanted to know what antibiotics still worked for her, how many bowel movements she has a day and the last time she coughed up blood.
“Two days ago,” she told him. “It’s usually one or two times a month.”
He prescribed walks every day to build up her endurance and suggested she increase her continuous oxygen flow from her normal 2 liters per minute to 6 liters per minute when exercising. He looked down at her worn Birkenstocks and said, “Your shoes will have to change.”
The doctor cranked up her oxygen and told her that if she wanted to get a transplant, she’d need to be able to do 15 sits-to-stands in a minute. He said this was non-negotiable. She won’t be able to use her arms after the surgery to get up from a chair or bed, he explained.
He asked her to climb off the exam table and show him some squats.
Claire — who used to do yoga six days a week, loved to swim and even went through a phase when she did difficult workout videos like P90X with her dad — crossed her arms in front of her chest and showed the doctor all she had.
For the first time that day, her cheeks had color.
“I don’t anticipate you’d be on the list for too long,” Afshar blurted out.
Given her blood type and her condition, he said, she’d probably get a transplant within three months of being approved — if she’s approved.

04/04/2018 – SAN DIEGO, CALIF: Claire Wineland, who was born with Cystic Fibrosis, has decided to undergo evaluation for a lung transplant. She poses for photos with her mother Melissa Nordquist Yeager in front of UC San Diego Health after going to a series of evaluations. PHOTOGRAPH BY MONICA ALMEIDA

The first full day of evaluation appoitnments complete, Claire and her mom breathe sighs of overwhelmed relief.

Claire’s eyes opened wide, and her mom appeared to melt into her chair. Suddenly, it seemed real.
“Three months!” Yeager said outside the center. “That made me want to throw up a little bit.”
“I’m a little overwhelmed,” Claire said. “I need to go back to the hotel and binge-watch ‘Real Housewives.’ I want to see white women fight over nothingness.”

Hoping for a chance

The truth is, according to Claire, not longing for different lungs for most of her life served her well.
She was able to “work with what I had in front of me,” she said, rather than fixate on what she didn’t have. She also suppressed that part of herself that might have simply dreamed of something more.
“If I had told myself things could be better than they are now, I think I would have driven myself crazy with frustration and jealousy over other people’s lives,” she said.
In changing her mind, she said she had to swallow some of her pride and “open this floodgate of emotion that I kept really deeply buried.”

A slew of tests still awaited Claire, but she was now all in. She had opened herself up to the possibility that life — for her — could be different and not as challenging.
“For the first time ever, I’m going there, and it’s really scary,” she said. “Now that I actually want something better, what if it doesn’t happen? What if I don’t get it? What if it goes wrong?”
The pressure is on, and Claire can only hope that she will be given her chance.

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What It’s Like to Die Online ~ Marie Claire Article

March 13, 2018

Hi and thank you for visiting our site!

Our Founder, Claire Wineland, is honored to be featured alongside some pretty amazing YouTubers in Marie Claire’s article below.  Be sure to look them up for a little inspiration!

What It’s Like to Die Online (Click this title to see full article)
Chronically ill women are turning to YouTube to share their lives—and deaths.

by AMANDA MONTELL AND DESIGN BY TRAVIS MCHENRY
MAR 13, 2018

“I have tried filming this video so many times, but I just don’t know what to say.”

Fifteen-year-old Sophia Gall has cancer, but from her hairless head and the title of the video, “My Cancer Is Worse Than Ever,” we already knew that. The problem is that there’s nothing left that can be done. Gall makes the announcement on her YouTube channel in an eight-minute vlog that has been watched more than a million times since it was posted in May 2017. The Australian teenager, an otherwise sunny, ebullient girl with cornflower blue eyes, is sitting in front of a camera on her pink bed, wearing a knitted beanie, sobbing.

 

Gall has been battling a rare form of bone cancer since June 2015. She thought she was doing better, but her most recent scans did not go well. The cancer has spread down her leg, and the doctors say it’s too aggressive to fix with chemotherapy and radiation. “I’m just going to go on a big holiday around the world and try to enjoy my life as much as I can,” she tells the camera, her freckled face collapsed, “because I don’t know how much longer it’s gonna be.”

 

Gall has been uploading YouTube videos about her life with cancer since a few months after she was diagnosed. In the two years since, she’s gained more than 145,000 loyal subscribers. They flock to the heartbreaking video, leaving comments about how brave she is and messages to stay strong. Gall’s next four weeks of content are much cheerier: She squeals at the Eiffel Tower, delights in a New York City shopping spree. Aspirational travel videos are a dime a dozen on YouTube, but these videos are different—the girl in front of the camera is dying.

It’s a phenomenon unique to the social media-centric era we live in—an era when even cancer is content.

 

A growing community of young vloggers use YouTube to chronicle their journeys with serious illnesses from diagnosis to hospital visits to sometimes getting very bad news. Arguably, the most famous of these content creators was Talia Joy Castellano, a vivacious beauty YouTuber who died of cancer in 2013 just a month before her fourteenth birthday. Over her two-year YouTube career, Castellano gained 1.4 million subscribers who watched her battle neuroblastoma (a progressive tumor of the nervous system) while falling in love with her lively makeup tutorials and precocious sense of humor.

“This is beyond reality television. It’s real life, with life and death consequences,” says mental health expert Scott Dehorty, a social worker and therapist in Maryland. It’s a phenomenon unique to the social media-centric era we live in—an era when even cancer is content, when you can love, lose, and mourn a person you only ever knew through a screen.

When Castellano first started her channel, becoming a “cancer vlogger” wasn’t her intention, she simply wanted to talk about makeup. Following her diagnosis, a family friend taught Castellano how to decorate her face with colorful eye shadows and lipsticks as a distraction. She came to love watching makeup tutorials. “Eventually she thought, ‘You know what? I could do this. I’m good enough to do what they do,’” says Castellano’s mom, Desirée. In 2011, the pre-teen began uploading her own bubbly tutorials and haul videos, which she’d film and edit on her laptop in her bedroom. It wasn’t until Castellano’s budding viewership began asking personal questions—why she didn’t have hair, for example—that she decided to talk about her disease. “She started raising awareness for childhood cancer through her videos, and the channel blew up,” recalls her sister Mattia, now 23. By 2012, her influence as an advocate landed her an appearance on The Ellen DeGeneres Show and she was named an honorary CoverGirl by the cosmetics company.

“Every morning I would wake up in the hospital with nothing to do. I’d basically just spend my day watching other people on YouTube,” says Gall of the impetus for her channel. “Eventually I thought, What would be so hard if I made these videos?”

“When you see somebody whose battle is so over-the-top, so beyond what you’ve experienced, you realize that you can get through your own struggles.”

Mary Dalton was diagnosed with Ewing’s sarcoma, a rare childhood bone cancer, the summer before her freshman year of high school in 2015. She started vlogging about her cancer journey later that year. “I’d always been interested in YouTube, and when I got sick I was really lonely and didn’t have a lot of ways to reach out to people,” she explains, adding that she was inspired by Talia Castellano. Filming and editing quickly became a fun and productive activity for Dalton to focus on during tough stretches of treatment. “Working on my videos gave me a routine,” the now-17-year-old says. “It was therapeutic.”

 

For Racheli Alkobey, who found out she had Hodgkin’s Lymphoma as a senior in college in 2015, the instinct to share her experience online was immediate—she started filming her first YouTube video the day she was diagnosed. “I just whipped out my phone,” she remembers. Alkobey’s first cancer vlog opens on a shot of her face lit by neon lights, a cheerful pop song thumping in the background. “So I’m bowling with friends…. Today was the day I found out that I have Hodgkin’s Lymphoma,” she tells the camera through a bewildered, anxious smile. “I’m a little bit in shock, but I have the most amazing

 

friends.” The rest of Alkobey’s video cuts to clips of her running errands with her pals, starting a new raw food diet, driving to the airport to catch a flight to meet with a hematologist. The vlog, titled “The Day After My Diagnosis with Cancer,” ends with an image of Alkobey snuggling in bed with her best friend. “Everything’s gonna be okay,” she says with a hopeful grin.

At the time this video was posted, Alkobey saw YouTube simply as a convenient way to keep her friends and family updated on her health; and hopefully, her vlogs would reach a few other young people with cancer, giving them something they could relate to. Before long, however, Alkobey’s videos…and Dalton’s…and Gall’s would come to mean more to their subscribers, and to their own lives, than they could have imagined.

When asked why she thinks strangers were so attracted to the story of a terminally ill kid, Castellano’s sister Mattia says that, “Talia gave people hope. To watch this little girl who is dying have such a positive attitude was just captivating.” People struggling with cancer or clinical depression or even something as quotidian as a breakup would leave comments for Castellano, letting her know how much she helped them. Dalton has noticed that watching her videos seems to make viewers feel better about their own lives. “When you see somebody whose battle is so over-the-top, so beyond what you’ve experienced, you realize that you can get through your own struggles,” she says. That sense of perspective is helpful, even necessary, for viewers. “Many girls worry about a bad hair day,” says Peg O’Connor, Ph.D., a behavioral health expert and professor at Gustavus Adolphus College in Minnesota, “but there’s a huge difference between a bad hair day because your bangs are too long and a bad hair day because clumps are falling out.”

Amid the whirlpool of reactions that come with receiving a cancer diagnosis is a feeling of inexplicable chaos, like your life is happening at random, and there’s nothing you can do about it. The ability to positively impact their followers makes the experience feel less senseless. “It helped me feel like the hard times were counting for something, that they weren’t just happening for no reason,” Alkobey says.

“There’s a huge difference between a bad hair day because your bangs are too long and a bad hair day because clumps are falling out.”

Equally empowering has been the simple act of taking their stories into their own hands. For the patients who are still minors, the decisions being made about their health aren’t entirely up to them. Creating videos is one way of maintaining some control. As Dalton describes, “Even though there were so many terrible things happening, with YouTube, I could make the terrible things into a video, into art. I could share it with people in my own way. That helped me cope.”

Dalton films her videos on a DSLR camera, and the footage is crafted with jump cuts, close-ups, music, and narration. Her films have an artistry to them—an intention. Videos like Dalton’s allow the creator to gain “autonomy and agency,” Dr. O’Connor observes, and the viewers get to see a full-blown individual, not a bedridden invalid. “The young people in these videos emerge as interesting, thoughtful, typical teenagers, who have some of the same concerns as others who are not sick,” she says.

Claire Wineland, a 20-year-old woman battling cystic fibrosis, lives on her own in Los Angeles, is financially self-sufficient, and runs her own foundation called Claire’s Place, which offers support to families living with CF; it’s important to Wineland that her viewers witness this. “You never see sick people as functioning humans doing something with their experience of being alive,” she says. “Yes, I have a terminal illness. But does that mean my life can never amount to anything? It’s really important for sick people to know: You’re more than just someone sitting around waiting for your body to fail.”

Of course, no matter how sick you are, how much sympathy and compassion you deserve, internet fame inevitably comes with negativity. While the majority of comments are supportive, these women do receive hate. Galls remembers a comment suggesting she was faking her illness and that she should go to jail for what she was doing. “I wish that were the truth,” she says.

Raigda Jeha, a Canadian makeup artist and terminal stomach cancer patient, was given only three months to live when she was diagnosed in 2015—she has been managing her illness holistically and creating uplifting vlogs about the experience since. But when she put up her first video, a guy commented, “‘Why are you so worried about your makeup? You’re dying,’” she recalls. “And then you get the trolls saying, ‘I have a cure! Buy this!’ Or people getting upset with me for pushing alternative medicine, which I’m not.”

There’s also immense pressure to post regularly. “When you get big on YouTube, you’re dancing with the devil a little bit,” says Wineland. “In order to keep up views and give people what they want, you have to produce a lot of content, and it’s hard to make meaningful videos when you’re posting so much.” At 17, Wineland launched her CF-awareness YouTube channel—featuring videos such as “What It’s Like to Be in a Coma” and “Dying 101”—and the teen’s exuberant personality and dark humor quickly earned her almost 200,000 subscribers.

“If you Google my name, the top thing to come up is ‘Is Claire Wineland dead?’ Which, I mean, is understandable.”

But in 2016, Wineland went about a year without uploading due to a squabble over ownership of her account (she initially hired a company to edit and manage her videos). Because viewers like Wineland’s are so invested in these stories—which are higher stakes than most—panic strikes when accounts go un-updated. Wineland recently launched a new version of her channel (which she owns and manages herself), but click on any of her old videos, and you’ll find dozens of comments asking what happened to her. “If you Google my name, the top thing to come up is ‘Is Claire Wineland dead?’” she says. “A lot of my followers think if I’m not posting, I’ve died. Which, I mean, is understandable.”

For sick YouTubers, the obligation to respond to the hundreds of daily comments from viewers—some of whom are seeking serious health advice—can be overwhelming. At 43, Jeha is part of a smaller faction of cancer vloggers from a different generation, a generation that didn’t grow up with screens. For them, the attraction is often as much about exchanging information as it is about seeking an emotional connection, explains Dr. O’Connor. Inspired by how proactive and knowledgeable Jeha was about her illness, a friend encouraged her to start her channel as a way to help other patients. In contrast to Mary Dalton’s highly curated videos and Racheli Alkobey’s action-packed vlogs, Jeha’s videos are simple—she films on her phone, selfie-style, with minimal editing. In them, Jeha is usually seated, casually chatting to her viewers about what foods and treatments have been working for her lately. She advises curious viewers to do research and take an active role in their own treatments.

Like the people they’re watching, most of the viewers are young; this may be the first time they’re seeing someone with a serious illness. It’s inevitable that many viewers end up internalizing the ups, downs, and losses, as if they knew these people in real life. “It may be the loss of someone they never met, but the loss is real,” Dehorty says.

This isn’t necessarily a bad thing. Watching an imperfect life unfold online can be healthier than constantly comparing yourself to the staged, overly filtered posts that saturate social media. Witnessing the life, trials, and possible death of a person on YouTube can force followers to look beyond their own circumstances.

Despite the heavy subject matter, the relationship between these vloggers and their viewers is overwhelmingly positive. In fact, for some it’s connected them to friendships and experiences that have made the inauspicious situations almost worth it. “YouTube is like a little family,” says Alkobey, who went into remission 18 months ago, is getting married this year, and met all of her bridesmaids-to-be through social media. Dalton, too, found her best friend, an 18-year-old cystic fibrosis patient who lives across the country, thanks to YouTube. And many of Talia Castellano’s closest online pals are still in touch with her family, who created a childhood cancer foundation called Talia’s Legacy in her memory. This has been healing for them. “We’ve watched her fans grow up online, and they continue to tell us how much they miss Talia, how much she changed their lives,” says Mattia. “They come to Florida to visit us; they go to Talia’s Legacy events. We’re so grateful to have those people in our lives.”

In a way, YouTube has allowed people like Castellano to cheat death. At any time, her family and followers can go back and watch her hundreds of videos as if she were still here, dotting her eyelids with fluorescent teal shadow and flashing an ear-to-ear smile. It’s something Jeha has thought about a lot recently. “I’ve got a large family, and these videos are something I can leave behind,” she says. “They can watch them and see I was happy. I was laughing. I was alive.”

“They can watch my videos and see I was happy. I was laughing. I was alive.”

In an ideal world, these women make full recoveries and can refocus their channels on stories of survival. Thankfully, Alkobey was blessed with a positive outcome, as was Mary Dalton, who is now a cancer-free high school senior. She intends to pursue a career in film production. “YouTube totally changed my perspective on what I want to do when I get older,” she says.

Vloggers like Sophia Gall and Claire Wineland aren’t as lucky—they know they won’t survive their illnesses. But considering the circumstances, they’re thriving, and their channels have something to do with that. Gall continues to make inspiring videos for thousands of fans, hoping one day her content will produce enough money (either through ad revenue, or perhaps a line of merchandise inspired by her channel) to give back to childhood cancer research. Wineland, too, has big plans to keep making videos on her new channel and growing her foundation.

“When you really understand that you can lose everything, it makes you want to live—to create something,” Wineland says. “It makes you want to be a part of the world. I mean, why not do something big with your life while you still have it?”

To learn more about Claire’s Place  or to make a donation, click here

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