I Haven’t Eaten In 4 Years | BORN DIFFERENT

truly
truly
616,685
0
Published 2023-11-05
SUBSCRIBE to Truly: bit.ly/Oc61Hj

26-YEAR-OLD Celia wakes up at the same time every morning to unplug her Hickman line - a tube that runs directly into her heart. Four years ago, Celia's digestive system shut down and she has been unable to eat or drink since, so the Hickman line delivers all her food, drink and medicine directly into her bloodstream. Running the feed for 14 hours from evening to morning every day, she has the remaining 10 hours "unplugged" to go about her life. Celia was born with an ultra rare condition called Loeys-Dietz syndrome (LDS) - a genetic disorder that affects the connective tissue throughout her body. Celia described to truly how it affects her day-to-day: "It causes a lot of chronic pain, it makes me incredibly tired and also I'm incredibly susceptible to various different illnesses. Many of my organs have now either not formed properly or started shutting down." Because of the wide-ranging effects LDS has on the body, the average life expectancy for someone with the condition is 36 years - so Celia and her family have to live in the knowledge that "it could happen tomorrow, it could happen in five or six years, but it will happen out of the blue." This is not lost on Celia's dad, who also has LDS and from whom Celia inherited the condition: "I am the gift that keeps on giving, that's the problem." And while the support of her parents and her husband, James, crucially enable Celia to live her best life, only one in every 70 million people have the condition and very little is still known about it. Celia has dedicated her working life to advocacy for and on behalf of disabled people - campaigning and lobbying to ensure their rights are not forgotten - and hopes to bring more attention to super-rare conditions like LDS: "One of the reasons that they're rare is because people don't know about them. If you do meet somebody that has a rare condition... Ask questions, be insightful, be respectful and be kind." And Celia's parents could not be more proud of what she has achieved up to now: "She's amazing, she gets up every day and she gets on with it. The fact that we're sitting here talking about her is her greatest achievement."

Follow Celia: linktr.ee/celiachartresaris

Videographer: Ross Fairgrieve
Producers: Hannah Beaugeard, Tom Buckman, Georgia Embling
Editor: Hailey Wang

Truly is on TikTok! www.tiktok.com/@truly_show

Now you can watch our videos in Spanish!: bit.ly/Suscribirse_truly_ES

Click here to follow your favourite Truly shows on Instagram!
Truly - www.instagram.com/trulyshow
Born Different - www.instagram.com/borndifferentshow/
Shake My Beauty - www.instagram.com/shakemybeauty/
Hooked On The Look - www.instagram.com/hookedonthelookshow/
Love Don't Judge - www.instagram.com/lovedontjudgeshow/
Beastly - www.instagram.com/beastlyshow/
Ridiculous Rides - www.instagram.com/ridiculousridesshow/
Dog Dynasty - www.instagram.com/dogdynastyshow/

For more amazing content, click here!
Beastly:    / @beastlychannel  
Barcroft Cars: youtube.com/user/BarcroftCars/featured
All Comments (21)
  • @GigglesDaDevil
    She handles this with such style and grace .. I wish her and her family all the best
  • @dianebryant4684
    I am 72 years old and dealing with being this age , and the pains we deal with in aging. BUT, after seeing what this young woman is dealing with at her age. I will never complain again because when I was her age, chronic illness wasn’t even a concern or thought. My heart goes out to her and I applaud her strength and determination to go on with her life. Cheers to you ❤❤
  • @franciscachesca
    I LOVE that she uses the little energy that she has to changes things. To make this world a bit more inclusive for people who are sick and have dissabillities. Bless her for that.❤ I am ill and disabled and I am fighting with you from The Netherlands.
  • @fanofthedog
    What a brave and graceful young woman. I wish her all of the joy and peace in the world. Her poor dad- you can see he would easily lay his life down for his child
  • @Jotinko
    I’m 36 and can’t imagine the thought of my life ending out of the blue. The dad shouldn’t feel guilty. I wish her the best.
  • @silentnight3970
    You can see the guilt on dad's face. Very sad but her personality is everything. What a marvelous family.
  • @pixpusha
    Infection is a huge risk. My heart goes out to her. I hope people around her are supportive and wear masks if they are ill, wash their hands and just remain understanding if she does't always want to go out or let folks in to her home.
  • @jj-if6it
    Poor girl, not even being able to enjoy food and drink, one of life's basic pleasures. She's doing well to remain positive
  • @jessicabundangkat3152
    She’s got a good attitude I like that she’s doing the best she can with her situation and does not let the struggles run her life.
  • @ktsketti
    I have Loeys-Dietz, so this video is a little scary for me. I'm fortunate to have a milder case, but my sister who is 36 is starting to suffer from the more serious side effects. I wish you well and hope you can still have a long and fulfilling life. Our condition is rare, but it is also often left undiagnosed. There are likely many more of us out there that will never know until it's too late. I'm happy that I know, even if sometimes I wish I didn't.
  • @kannnbabyyy2121
    SHES EVERYTHINGGGGG!!!! Her family is soooooo beautiful and her husband is perfect for her. I love this girl and her story 💜💜💜
  • @elsiemay2202
    If 1 in 4 people are disabled (including myself) why aren’t they more facilities out there. I completely understand how your lovely Dad feels as I too past an inherited disability onto my 2 children, although it wasn’t until they got diagnosed that I actually got my diagnosis. I feel incredibly guilty as I know actually what they’re going through. It’s awful watching them suffer, 24/7 chronic pain, organ problems, chronic fatigue, POTS, Refex Anoxic Seizures to name just a few. Daily living is a daily struggle but we do our best to get through. Thank you so much for sharing this video. You’re a true inspiration! ❤❤
  • @BJ-ek2jg
    Girl I love the way you have learnt to deal with the situation. You are an inspiration. You have made up your mind that you want to live life. There are so many people who don't have such a situation but are not grateful for how God has blessed them. You have made your spot in this world. God has chosen you to be a miracle for everyone. You have wonderful parents. That's how a life partner should be. Who stays at your side in a good or bad situation . Your entire family is an inspiration. Lots of love from me to your family for being an inspiration to me and the world.
  • @plan4life
    Wow! She is incredibly strong. I would have given up years ago. I think her parents should also feel proud of themselves for the way they raised her, there is clearly a lot of love and support there too.
  • @gabrieladiaz2652
    As a fellow disabled person, I am so inspired by your attitude. Finding the strength to "crack on," as you say, is often the hardest part 💜
  • @ReineDeLaSeine14
    the prevalence of LDS is vastly underestimated. I was diagnosed with EDS (Ehlers-Danlos Syndrome) for 11 years until I had genetic testing that showed my variant is associated with LDS. it’s hard to find assessment for it because my family hasn’t had the extensive aneurysms many with LDS have. I have the same GI problems this woman has, and mine actually have improved…I’m not tube fed anymore.