TEDxLaJolla - Claire Wineland - It's Just a Disease
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- Опубликовано: 12 окт 2011
- 14 year-old, Claire Wineland was born with cystic fibrosis or "CF", a genetic disease that causes excessive mucus secretions and collection, especially in the lungs. In her short life, Claire has undergone dozens of surgeries and has spent weeks at a time in the hospital.
This is not, however, what characterizes her. Claire is a singer, an artist, a composer, and a natural-born comedian. She radiates with a warmth and wisdom beyond her years. She has been called a "little Buddha" a "bridge among people", and a "true old soul." She is precious to anyone who has met her, especially to her mother, Melissa, and her father, John.
On April 13, 2010 after a relatively routine surgery, Claire became septic and within 24 hours, was in complete lung failure. Her parents were given the option of watching Claire die or putting her on a dangerous oscillator vent, which no child with CF has ever come off of. Her parents opted to put her on the high powered vent and into a drug induced coma so the doctors could try everything possible to reverse the damage to her lungs and her body.
What followed was a remarkable two-week journey of prayer, love and healing. The family was buoyed by an inconceivable amount of support from friends and family. While Claire lay in her coma, kept alive by the maximum amount of life support possible, her friends and family began to pray. Spiritual groups of every possible denomination worldwide were given Claire's name or in many cases her picture, round the clock vigils of sometimes 50 or more people met in the hospital cafeteria and Claire's parents and family slept by her side and in the Pediatric Intensive Care Unit for 17 straight days.
So many people were inspired by Claire's journey that a public Facebook page, "Claire Wineland Love, Songs and Updates" , was created to disseminate the seemingly ever changing information. Within two weeks, the fans on the page grew to over 900. Out of this grew the desire and need for a foundation.
Claire came through this harrowing event inspired, passionate, and very excited about making a difference for other children and teens by sharing her experience, strength and hope with them. She continues to suffer many setbacks but maintains a positive attitude and believes this is the key to living a fulfilling life -- despite being burdened with such a deadly disease.
Claire and her parents want other families to experience the benefit from the kind of support that they received and continue to get; hence, this is the motivation for the foundation. Claire's experiences have catapulted her into a position of being a spokesperson and an inspirational model for people living with this disease. She has documented and created videos on how to enjoy life with Cystic Fibrosis and live life to the fullest. Claire's Place Foundation is a way for Claire to give back and make meaning of what she has had to go through; the foundation is her way to enrich the human experience with hope, strength and joy.
www.clairesplacefoundation.org for more information about Claire.
she's a better speaker at 14 than I am at 36.
and smarter than me
+sue she dont do that do yourself man ! be proud of urself .
same same
sue she | C'mon man, believe in yourself!
sue she punny name 🍣
I am absolutely floored at how mature, poised, and well spoken she was at only 14. I mean... articulate, comfortable, engaging, authentic, funny, the list goes on. God bless Claire!
Better speaker at 14 than most adults who do these talks.
Jack Dempsey so true
Jonathan Dempsey and she said in one of her youtube videos (years later) that she was super anxious the whole time she was up there
Jonathan Dempsey but yet she carries herself so well
Stolen comment
Claire is 19 now. She spoke to our company today and I was deeply touched by her message. Im so glad they are close to a cure.
they are?! Seriously?!
steve hollingshead really!!!
steve hollingshead so now she's 20? How cruel time is :'(
UNIQUE SEKAR KINANTHY yes, she is 20 and still making videos ♡ check out "tub talks" on RUclips
She passed away two days ago after a stroke caused by a blood clot. She’d had a successful lung transplant just a week ago right before the stroke. It’s bittersweet. She’s in a better place now.
If there is a god up there,thank you so much for letting her live because she has been one of the biggest inspirations to me
i found out about her today, shes emotionally uplifting
there is indeed
Medical science is why she is alive today.
TJazz MCNeil That's for sure..thanks for correcting me
yes!
Claire needs to be a comedian. She is literally one of my favorite people in the whole world!
That would have been neat, I haven't found it yet, but i've been searching seldomly for it.
Man, I just want to hug her...life is so unfair. A beautiful human being.
I feel the exact same way.
I feel the exact same way.
This might sound crazy, but life isn't unfair. She chose to be born with this illness for obvious reasons (at least in this case) - to teach people how to cope with illness and death - on top of other things she takes away from the experience. Death is only an illusion, but that is another matter.
So before we are born to Earth, we choose our body, skin color, family, country and so on. Often we travel in soul families, meaning that you've probably traveled with your loved ones (family, friends), through multiple lifetimes, changing roles between lives and learning from each other. Before we are born, we see all the different ways our lives might turn out - and we accept them. Nobody forces us to come here or do anything, we do it all ourselves. We might even choose to be tortured by someone, and it might be a karmic lesson, or we might just want to teach someone else a lesson. This all comes down to unconditional love, the consept of which is very hard for a lot of people to understand - even though unconditional love is all that exists.
Earth is a crazy and difficult place to live, but we all voluntarily came here. All who come, are certainly brave souls.
There are younger and older souls, and Claire Wineland is definitely on the older side.
Sorry for the long message, I don't know if this makes any sense to you, but I hope so :)
Puckles100 Yes we do. No reason to be angry here.. You will find out about all of this yourself when you "die".
Some people choose to be born ill because they're not looking for an easy life to live. Challenges like this disease are the fastest ways to learn our most beautiful and important lessons. The more difficult life you have, the faster you evolve.
Puckles100 We are all "God", or the universe experiencing itself in infinite forms of life, and as souls we know all of these things already. Our memories are just wiped out before we are born to Earth (though young children sometimes remember their past lives), because if we would remember everything, it would be difficult for us to concentrate on our lives and lessons here on Earth.
There are younger and older souls, and the older you get, the more conscious you become; the more you remember/know.
You are obviously still a young soul, but there's nothing wrong with that. Everyone learns the same things eventually.
"You will never truly get what you want , until you want what you have". That' how I discovered her. And I come back today she passed away and I am such in a froze state of mind. She was, is and will forever be such an influence on me for the rest of my life. How can we love someone that you've never met so much, I love her so much I am so thankful she help me so much I want the world to know that such an angel was there... I can't even put my words together She was everything she will NEVER be forgotten. Thank You for everything Claire
💜
She had a powerful charisma, was such an authentic, intelligent and creative young woman. She touched a lot of lives by her message of positivity and acceptance. I'm glad we had the opportunity to impact hers and her family's with the fundraiser. She will be missed and we'll think about her forever. She was the representation of the best qualities, the best part of what being a human means in an area where people are so easily the worst version of the themselves. It won't necessarily make sense to anyone, but it does to me.
She was perfect just perfect. She has no idea what impact she left on lives of ton. She existed for a reason, for the well fare of others. And before gaining her wings she complained the aim of her existence. More power to her parents and family.
Love,
XoXo
Claire is one of the only youtubers who genuinely inspires me to be a better person.
You were a gift to the world. Wise beyond your years.
A mature, wise, and smart lady inside her tiny body. Bless your soul Claire..
Claire Wineland is the ultimate reason I still keep fighting and living the life with Cystic Fibrosis that I'm proud of!
It is not about how long you live, it is about what you do while you are alive. She will always be alive with those who's lives she changed.
May Claire Winland Rest In Peace
She's a beautiful young lady that is more knowledgeable than most 30 year olds. I was fortunate to be one of the many Respiratory Therapists to take care of her at Miller Children's Hospital in Long Beach, California. I totally understood the reasoning behind her refusing her treatments with her vest.
I've seen her father several times. I would work night shift and always come see her around 9 pm. As a teen I respected her time and we would work out what time she would be "offline" with her friends and ready to do her treatments. These treatments are no jokes. Her last treatment lasted between 30 minutes to an hour depending on how she felt. I had many conversations with her during these treatments. She is an AMAZING young woman.
Just a couple years later I would find out that 3 of my 4 children were diagnosed with CF. We were already overwhelmed with our youngest child being autistic. So now we have 3 with CF, and 1 with autism.
She is an inspiration and I enjoyed every conversation we ever had.
I have cystic fibrosis and I miss Claire so much she was such an inspiration in the CF community 💛 Rest In Peace Claire Wineland 💛
I watch this when I’m sad. Thank you for the beautiful impact you’ve had on my life. I remember in the last video you made you said you really wanted to live and experience more. So I vowed to not kill myself and to live for the people like Claire who didn’t get to live. I love you. Fly high. 💕
She said that she's probably not gonna live past 18 and she is 18 now 😔
😔
Maybe the circumstances change. I know it varies, but the average age is 35 years old...
Jaeden Rotondo good! :)
+iidass ya, it's being going up over the years.
She said when she was a baby it was 12, then it moved up
I'm currently in the hospital with my 11th lung collapse awaiting a surgery and somehow never knew Claire had a Ted talk, through her young age she managed to bring more awareness about Cystic Fibrosis than anyone ever has. She may have passed too soon but she helped drastically increase the life expectancy of everyone else with this illness. 13 months after she passed a breakthrough in cystic fibrosis medicine came out called Trikafta as a result of the awareness and funding the CF foundation was able to use for research. In my doctor visit before having Trikafta my lung functions were at 38% and the doctors started the conversation with me about a lung transplant. The next visit just weeks after I was on the medicine my lung functions increased to 58% and said I may never need a transplant and if I do it wouldn't be for decades. The medicine only works for about 90% of mutation types so I'm not sure if she would've been able to use it but it's heartbreaking that she didn't make it to at least see the medicine come out and see the true impact of her legacy. I'm so thankful for her as well as countless others are, Rest In Peace.
hope your well.
*And now she's in a better place R.I.P.*
There is no better place she's a skeleton under dirt
indeed
everytime I hear her speak I can't help but cry. she's got such a beautiful inspiring soul and she's such a blessing to this earth honestly
rest in peace, beautiful soul.
I just found her tonight and as someone living with a chronic illness she's so so incredible. She has the right mindset and she's completely right. I've got Ehlers Danlos Syndrome Hypermobility type. Eds isn't terminal like cf but it is scary and it is very real. Being sick all the time can be scary but we do live. We are people. And it's OK to ask us questions. I promise we aren't some magical creatures!
Hi! do you know Martina from the channel "Simon and martina"? they make funny Videos and martina also has EDS; maybe checking out her Videos could help you a little bit? i am so sorry for you ...
I've got ehlers-danlos too. I'm going through the hardest year of my life in terms of health and it made me realize that I will never live a normal life. I will feel more pain, I will have difficulties doing things like walk, and simply grabbing things, but that's the body that I have, and many people have it worse.
This girl is amazing, she is still alive and happy, and I realised that I can be happy too.
I also have the hipermobility type.
Kate Herreid I HAVE IT TOO
I have EDS too, and it affects every part of my life day to day and has taken so much from me, the pain is unbearable a lot of the time, but finding other people faces adversities with their health too help me find the strength to keep going and know I’m not alone. This disease is rare so I feel alone in this struggle a lot so it’s nice to know that I am not alone in EDS. Although it’s something I wouldn’t wish on anyone. Hope you all are doing as well as you can be!
Her personality was so much larger than life itself. I feel touched by her higher power. Only discovered her here yesterday. I love what she is saying about illness, and it helps me want to think of my invisible illnesses in a new context. She sheds light where there is darkness that is for sure. RIP beauty
Aaaahhhh. I know this is 4 years ago but she is soooo beautiful. I'm so glad I came across her channel.
What a lovely young woman she was!
I understand fully what she means by a health problem enriching your life!
Such a shame that this gem of a human being is no longer with us!
Whenever life gets tough I think if her now .. everything she says is so true and so wise. RIP claire.
how come this doesn't have millions of views?
She's noticeably intelligent. Love this human!
I can't believe she's actually gone, im glad she lived her life to the fullest she could even knowing her time was limited. R.i.p and hope you're at peace sweet angel. You're helping someone in need.
Going through all her old videos
Rip😢❤
14 going on 40. So much wisdom in this child’s mind, it’s incredible.
Amazing that she wasn't even a trained speaker till she was 18. Sad she passed at 21.
Rest in piece, sweet girl. You made it to 21 and lived a richer life than most of us because you made every day count. But now the struggle is over. You will definitely never be forgotten. ❤️
RIP Claire, you are a real inspiration
Rip Claire the world lost an angel last week.
Angels are just imaginary friends just for you to know.
Claire,
I'm friends with your dad and although we've never met I wanted to let you know how inspiring your talk was.
Chuck
Shes truly amazing
RIP Claire - I saw the news today and I knew I remembered you from somewhere.
I could listen to her voice all day ! It’s so relaxing and beautiful ! RIP angel ❣️😢
Rest in peace angel 🌹
I love her so much. And this is really food for thought, I think everyone has their crucible - we have to go through the flames so we can rise.
You’re never going to be happy with what you get unless you are happy with what you have!
I came across her just a few weeks before she died and hearing of her passing was gutt wrenching.
I feel so much for those who've been following her for so long. ❤
1% chance of surviving! WOW! What a true blessing she is still here today. :))
What a sweet, perfumed and incredible girl this angel was. What a loss for all.
Thanks TED for letting her on stage! She's amazing.
One of the most inspirational people in this world 💕❤️🙏🏼
"hairball" XD
Kristianna Flores So funny!!
Kristianna Flores 7:45
Maryline San ?? Okay?
Kristianna Flores Just giving the timing to watch it again and again cuz she's adorable
Maryline San oh. Nice. I should have done that in my comment.
I feel the same way about cancer as you feel about cystic fibrosis. It's brought so many good things into my life! I want to be you when I grow up (and I'm 56 - ha ha)! You're the most inspiring person I've ever come across. GOOOOOO Claire!!!
You're a beautiful person and such an inspiration! Could listen to you speak all day, every day.
This was a very inspiring video. Spoke incredibly well for a 14 year old. This is why people with CF continue to fight.
Reason in peace, Dear Claire, and may your messages remain forever on the internet.
She is absolutely brilliant. A beacon for many, her beauty is unmatched, her intellect untapped. I think every person with depression or illness should listen to this soul.
She's amazing! I lover her to pieces just for this! ♥♥♥
"You will never get what you want until you want what you have". "Cherish every second and make the best out of what you have and, sometimes, the best of what you have is what you have. "
I've just been diagnosed this week with multiple sclerosis. I'm going to see it as a door opening instead of closing. I love her laugh. Very Beautiful, smart young lady. Has totally changed my outlook on my MS. Love what you CAN do!!!! An illness can make your life more rich and fulfilling x
you are an absolute blessing
RIP Claire! Your infectious bright light will continue to inspire forever more! Xxx
This girl is so cool. I love watching her vids. So proud of her for doing a Ted talk!!
She was so smart and knew so much, also suuper well-spoken, Claire, thank you for being part of this world! ❤
i can't even imagine thinking you're gonna die in 4 years when you're 14. It is amazing she could handle this situation when she was actually a teenager at the same time. I'm 15 now and I can't imagine living my life while knowing my life expectancy is just 3 more years. Now she is 20 and she has been a huge inspiration for me, I'd so like to know her in person. She is awesome.
Alara I think she's 18 actually 🤔 But I could be wrong
I have binge watched her videos. So much wisdom. I love Claire! As a matter of fact I am gonna rewatch them now again.
Clara you are the change that we need in out world! Never change! God Bless you!
You are a gifted public speaker. Your sincerity and vulnerability are inspiring.
this has given me a whole new outlook. i am thankful for these challenges now that are helping me be who i am! you're the best, claire. thank YOU.
Whenever I'm sad I watch videos of her she's so positive and happy despite her situation it inspires me
No thumb down? Faith in the world restored!
4 now😥
Frank Einstein 28 now WHAT HAS THE WORLD COME TO ??
"Hairball!" See? You need to add some light and humor to it. You have a disease but are positive about it!
Such an amazing soul 💕 RIP Claire.... 💕
I hope Claire's beautiful soul rests in piece
Yes in pieces she is a skeleton now
Clair you had a major role in my getting up and doing what I am supposed to do in life. Many thanks for all you do!
It’s so surreal to watch her now.
It’s crazy to believe she’s so young here too
Miss this beautiful soul
She was a gift.
Aw... she was such an inspiration and she speaks well then most adults.
I love her, she's so inspiring! I found her channel about a month ago, she is amazing and should be a comedian.
She made it to on 21 , but this video made me cry I could see her light shine through. Im 14 aand shes more braver and amazing then I am.
Rip Claire. Omg I watch your videos and I just stare at you. You are so beautiful and an amazing a motivating person. We all miss you breathe east sweet heart 💝
Rest in peace beautiful girl
This is a wonderful speech from a wonderful person.
The most wonderful positive attitude ever and such a gorgeous girl
Rest in Peace Claire.🙏 You were such an amazing speaker and life teacher and exemplar. I'm so happy that you lived as long as you did and educated so many people.💚
She is so inspiring. What an amazing Girl! Such a positive mind set. I Loved everything you said, even if this was years and years ago.
I live with a physical illness. It's not terminal, but yet it consumes my life. I'm too embarrassed to say what it is but it causes extremely painful stomach cramps about once a month. I tried taking medication to help, but it was a medication where I had to change according to what felt right for me. Thinking about my daily dosage was all I thought about. I couldn't go out with friends, I couldn't focus in school, and I could barely eat. It was hard and I'm trying to learn to stop letting it take over. I know you all don't care but it feels good putting it out there. To all of you there who have an illness, never ever let it consume your life like it did to mine.
Awesome stuff! Great speach! Wonderful theories & amazing perspective!
R.I.P. Claire, you still inspire me to this day. I miss your words and wisdom, and although I never knew you in life, I still mourn your loss as if we were old friends.
Rest in peace angle. You truely made a difference.
Angel*
You are really brave and you have such a positive outlook on everything. Your awesome! 😋👍
Amazing message from a beautiful soul.
She is fantastic.(maybe it's late... but I am Italian)
video brought tears to my eyes... Claire is really the coolest person ever ! plus she's very beautiful by looks as well as by her thoughts..I love her voice too
I miss this girl so much! She was the kind of girl you’d want to be friends with, especially since she wasn’t afraid to be weird or share her experiences about Cystic Fibrosis! With videos like this though, they are reminder that a part of her will always be with us! RIP Claire Wineland!
Awesome attitude. You don't let it define the boundaries of your spirit, or think of yourself as a victim. Very inspiring!
this girl just made me feel so much better about my severe displastic spondylolesthesis. I'm 15 now and I wish I had seen this four years ago when I had spinal surgery. She is a such a great speaker too
Adeline Anderson what’s that?
Rest in Peace - beautiful and missed Claire Winland
Rest in peace Claire wineland! We love you. We need you! We miss you! She is now in better place. 😭😭😭😭
"Hey we took pictures! Oh darn..." haha
What an amazing outlook she has
You make me smile, you are very wise!