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- เผยแพร่เมื่อ 14 เม.ย. 2022
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24/7 LIFE SUPPORT is being used to give a young student with a paralysed stomach the opportunity to lead a somewhat normal life. Kelly Baker, of Arkansas, has Ehlers Danlos syndrome (EDS) which has severely affected her digestive system to the point she is completely unable to eat or drink. The 17-year-old went on a feeding tube on her 13th birthday, and is now on Total Parenteral Nutrition (TPN) alongside her feeding tube - a form of 24/7 life support which Kelly carries in her backpack. Kelly told Truly: “TPN is my only way to get nutrition and hydration. I'm pretty much a hundred percent dependent on everything that goes into my veins. It might just look like a normal backpack, but it's literally keeping me alive.”
Follow Kelly here:
/ kellysgotguts
Videographer: Bunee Tomlinson
Producers: Joe Roberts, Yasmin Walker
Editor: Emma Mitchell
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Wow what a strong woman and incredible story. It’s so admirable how she doesn’t let this define her. Props to her 👏🏽💜
Thank you! I never imagined I would have to go through this in my lifetime but it definitely can’t stop me from accomplishing my goals
@@kellybaker2112 i really love you... All the best for your future
Prayers goes out to her. I couldn't even imagine not eat solid foods.
Me too! Couldn’t imagine not being able to eat anything!
Thank you! It’s definitely hard but you do get used to it after a while
It kinda just becomes your normal I couldn't of imagined it either but when it happens you just have to roll with it.
Fellow tubie here :) I have EDS too as well as POTS, MCAS, sjogrens, intestinal dysmotility, cyclic vomiting, etc. I'm on daily IV fluids and about to start TPN for nutrition. I'm in palliative care and I also don't go anywhere without my backpack! It's a tough life, but our attitude is what defines us not our illnesses! Stay strong, girl! Sending lots of love!
I declare healing and deliverance from all illnesses in the name of God who is currently doin miraculous miracles right now , say AMEEN !!!!
Sister please give me your contact , I need to pray for a powerful miracle healing for your body on phone , I swear with my life , nothing is impossible to God , I've seen it happen in other people's lives it can also happen to you...
@@pleassubscrib5417 Stop it.
Are u single?
@@iamme4494 // 🤦🏼♀️😡 don't b SOOOOO cheesy
Man must be some tough stuff to live with. With the ones with medical issues I honest respect and solute for being so strong and independent. They don't let it define them. If I had this case the thing I would miss the most is food. Strictly food.
Tragic to think that before feeding tubes existed most of the people with this condition just starved to death 🥺
Hello 👋 how’re you doing
God is doin miraculous miracles to those who wish to serve him.....
True ey.
@@pleassubscrib5417 no, God cannot help with Ehlers-Danlos, only doctors can. Maybe God gave the doctors the power, but they help everyone.
@@pleassubscrib5417 If that were true, there wouldn't be any deseases and disorders in the world.
Please stop saying such things to people with chronic things. You just give them false hope that they will be cured by a god, or they might feel like a failure for not believing enough when they do believe but their desease doesn't get cured.
I hope you know how much sharing your story meant to me , it touched my heart - I'm a fellow teen EDSer, and hearing from your hardships and experiences, they mirrored mine so much, all the way down to being crushed that not even the feeding tube would work anymore and that another intervention was necessary. I've always had insecurities about having developed symptoms later into adolescence and the worry that people think we "chose" this instead of being born with it, and now I know other people feel that way too . . . thank you, thank you for sharing your story and helping myself and all the other zebras out there to feel a little less alone!
Love to see awareness being spread about ehlers danlos syndrome.. I was misdiagnosed my entire life. At 37 I finally was diagnosed with ehlers danlos syndrome, gastroparesis, mast cell activation and just recently dystonia and atonic bladder. I'm on such a downward spiral because of doctors not being educated on this condition. Girl you are AMAZING 👏
I have EDS too, and not officially diagnosed, I need to be a bit farther through puberty, but I am on the Hypermobile spectrum
Same here, for decades I was told "we know something is wrong with you but we don't what or how to treat it" or they'd blame it on my weight (which I'm hindered from losing due another chronic disease). Its so discouraging that most doctors have never even heard of it. The more I learn about EDS the more depressed I get. Good luck on your EDS journey!
Love this kid. Her family must be so proud of her.
Hello,👋how’re you doing
Girl you ROCK, so inspiring, kind, beautiful and smart young woman who’s taking the challenge head on. This is the real role model for any woman or even any person.
I have EDS as well, but to a very mild degree. When I was growing up it was kinda cool how I could dislocate my joints at will, but then came the pain, and my diagnosis only came about because I became a nurse and figured it out myself. 😉 I'm sorry EDS has been so rough on you, but I'm so glad you've found ways to keep living a good life in spite of it!
Thank you for your advocacy work, and I wish you nothing but the best, now and for your future! Take care! ✌️💜
So sorry you have EDS too! It wasn’t mentioned in the video but I’m also going into nursing because of my medical issues too
I have Hypermobile EDS, and only got diagnosed because my sister was, and we were experiencing similar things at a young age
@@kellybaker2112 Your the one in the video right? I have Hypermobile Ed’s and I’m sorry you have to go through what you are, if it’s ok to ask, what type do you have? I support you and you can do this!
You could dislocate your joints at WILL?
Does anyone remember those classmates/siblings or whoever who would do that weird eyelid thing? Imagine that, but some kid goes "Hey, hey, look at my finger." **pop**
@@ja.lena.a Yep, and for me it was my shoulders that most easily dislocated and I could do it at will; a great party trick! My friends were always saying "Hey Suzy, do your arm trick!", and it would freak everyone out. I could basically play jump rope with my arms....slow jump rope, but jump rope all the same. Unfortunately I had a really bad injury at work when a 700 pound patient fell on me, and after all the surgeries to fix all that was crushed and broke, I'm no longer able to do my arm trick, but I'm not paralyzed, so it's a fair trade.😉 🤷🏼♀️
*I can deal with all the blood and guts in the world but the eyelid thing you mentioned still grosses me out. Ewww!
Truly an amazing woman. God Bless her. Hoping some day soon she can ditch all her medical supplies and can eat and drink actual food.
Kelly is so brave , god bless her🥰
Hello, 👋how’re you doing
Glad that Kelly is staying positive and being strong.
This. This is what this channel should be about, posting these types of video's. I have multiple chronic conditions, compromised immune system, & now my doctors believe I have POTS, as well as autoimmune disease/disorder. More advocacies, awareness, for people like her, and I. ❤️
That beautiful young lady is so strong, intelligent, mind healthy and impressive, may you have nothing but greatness in your life.
o kingdom of god. You are an angel with beautiful eyes who are holy by Allah. God created humans, male and female.
God blessed them, and God said to them, “Be fruitful and multiply. Fill the earth and conquer it.
Dominate over the fish of the sea, over the birds of the air, and over all the beasts that creep on the earth.”
@@mikedenison121 Fine, thank you.
You are very determined young woman ! Your parents should be very proud of you , with the energy you have🌪. The sky is the limit for you ! Well done young lady 🌹
A very powerful story, so glad she doesn't let her condition stop her from living her life to the fullest.
This has made her much stronger and have confidence in herself.
So glad she has found a purpose in this by helping others through advocacy.
Wish her all the best in the future.
It is awesome that a nurse comes to your house to do blood work. They make my 80yr old mom go out in the middle of winter once a month to the clinic for hers.
ㅎ
God bless you and your strength.
I'll never say, "I know what you're going through," because that's not true. We all feel joy and pain individually.
I do have EDS that effects my intestines and bowel as well (also including HAE). Watching your story, I can feel you.
I've already had a foot or more of intestinal dissection. None of this shows in my family history as will. Just want you to know you're not alone, and I enjoyed this video. Thank you. 😊
EDS is rough to live with. She makes the best of life. Fellow zebra, you go girl! Ehlers Danlos is extremely painful for me. My body attacks itself through MCAS.
This young woman is incredible. Just bloody incredible. ❤❤ Well done mum for being a hell of a role model. Inspite of this condition I can see her with an amazing future and being a global leader/contributor in any field she desired.
Hello, how’re you
Can I just say how proud I am of you and I don't even know you... I can relate to you on so many levels... What you said in the end... "You are your own best advocate... Knowledge is power..." thank you for saying what I knew to be true, but affirming it with your own story and really all I can say is... You Go Girl! You inspire me!
Thank you so much! And I truly believe it, there were a lot of times that I was the only person advocating for myself and it was vital that I knew everything that was going on. It’s stressful but beneficial in the long term
@@kellybaker2112Thanks for replying! You are absolutely right... It is so stressful to be the only person advocating for yourself and it's hard to do when you don't feel well enough to do it but it's completely necessary. I have Sickle cell disease with gastritis and gastroparesis and I am constantly being judged and treated with less care than I believe I deserve. I'm constantly having to fight against this system that I feel doesn't value my life enough to take the time to listen to me or constantly falling short in taking care of me when I say how body feels and this is what I believe I need or this is what I want to try... Constantly feeling ignored, neglected or not taken seriously when I talk about how my body feels and feeling bullied into situations that doesn't feel right for me but because I don't have more knowledge and understanding over my disease it keeps me at a disadvantage. Because I'm not the doctor with the degree, I don't have value over what I've come to know to be true about my body . I've been wondering if I need to go back to school to get more education and understanding of my disease that way I'm not at a severe disadvantage when speaking with health professionals.
Dang! She's so strong and powerful. Thank you so much for sharing your story. I have a much milder version of eds. For me, its mostly joint pain and dislocations. I couldn't imagine going through more than that. Its amazing how she is able to push through the struggles to spread awareness about chronic diseases
I don’t have the dislocated luckily, but the pain and other issues (asd adhd anxiety ect.)
Wishing you well!!
we have our own battles in life, we could be considered disabled even if we do not carry a bag/TPN, is that it? what i mean is, all of us are suffering, just in different ways, and so, all of us just need to keep fighting!
we got you friend! thank you for being strong, an inspiration, for caring to other people, and for being smart and selfless! you are worth it!
may you and your family be always happy as often as possible! stay safe! 💙💙💙
She's so pretty and very mature. Sending prayers for her ❤️
Thank you! I appreciate it!
When you look up the words, strong, courageous, fighter, never gives up, unstoppable, etc., you should remember ALL the person's that have been on this platform, telling their stories. ❤
Truly amazing people all around. ❤
Aww thank you so much! I think that everyone is strong in their own way, they just don’t realize it until they have to go through something like we have
@@kellybaker2112 amen, I agree with you on that.♥️
Thank you for sharing your story, Kelly. My daughter has EDS-h and suffers with many of the same problems you have. Her digestion is messed up so much she has to have a IV drips daily because she can't even absorb water orally. The food problems are even worse.
In addition to EDS she also has POTS, MCAS, dysautonomia, gastroparesis, Reynaud's disease, fibromyalgia, and spinal stenosis. Her hypermobility is so severe she can hardly move without dislocating something, including her throat and her ribs. I can hear it in her voice when her throat is dislocated. She bought a full body brace to try and help it, but she can't get it on and off because her body goes out so much while she's trying to get it in place.
It's taken years to get a diagnosis, which she got about two years ago, and effective treatment is difficult, nearly impossible to find. She's become allergic to everything she eats, so she's actually diagnosed as food intolerant and can hardly eat anything. She's so skinny that I worry every day that she won't survive. :( She hasn't been able to do TPN because she's allergic to it as well. I hope and pray every day that they'll find new ways to help people like her (and you) who struggle so much and try so hard just to function in the world. I wish so much that doctors would believe you, as well, and not treat so many like it's all in their heads. *grrr* Severe EDS is a terrible, hard, life stealing disorder and I wish you the best.
I'm at a loss for words... my heart goes out to you and your daughter 💙 I pray she gets comfort and peace soon with a stable treatment.
I am so sorry you have to go through that, I have Hypermobile EDS as well. Not as bad, especially since I have had pt since diagnosed, but I do understand the pain you must go through. I’m most likely have POTS, but like Hypermobile Ed’s, I need to be farther through puberty
Wishing you guys luck and well
I have Severe ME, POTS, GP, MCAS etc & found out I was allergic to the lipids & egg protein in TPN. I’m now on non lipid formula (which I’m still struggling on, but would be dead without). Worth looking into if you haven’t already. Xx
@@SerendipityArtandGaming
As a child I was diagnosed with schizophrenia cancer at very young age 2 year old I have to carry my pocketbook on my shoulder every day to save my life
I absolutely love this show . Born different no you’re just born with medical needs. Absolutely amazing people on here 🥰
I love how Stright forward she is about it and what’s ppl to learn more about her disorder to get the word out there while ppl continue to research to maybe hopefully they will find a cure
I’ve just got home from a 10 month stay in hospital where I was on TPN most of the time. I have a stoma now and am doing my best to get enough calories in by mouth to hopefully gain some weight. I can’t imagine being on a TPN for life! Bless this girl, she’s very brave and an inspiration!
I understand having a backpack to live. I have gastroparesis and I have all of my medicine and stuff in my bag and I keep juice and snacks in there too to keep my blood sugar high because it tends to drop really really fast. So as I can say you are really strong and amazing and are a TRUE inspiration to me because right now I am at my lowest and you told me to learn about my disease and to keep positive so that’s what Im gonna do! Thank you!
Bless her heart, she's an amazing woman!
o kingdom of god. You are an angel with beautiful eyes who are holy by Allah. God created humans, male and female.
God blessed them, and God said to them, “Be fruitful and multiply. Fill the earth and conquer it.
Dominate over the fish of the sea, over the birds of the air, and over all the beasts that creep on the earth.”
Wow is right I couldn't imagine dealing with that !!!! But you do what you gotta do she is strong ♥️🥰
I'm happy for you that you finally got a correct diagnosis. I understand how difficult it can be at times to receive the correct determination of what is causing your health issues. And then getting the best physician to handle your care. Those of us whom live with Autoimmune disease's and disorder's especially rare ones must advocate for ourselves. And often times other's as well. Thank you.
My prayers are with her and her family and I hope that they find a cure for what she has and this is so sad.
Hello, 👋how’re you doing
I admire your intelligence and maturity. You will be an inspiration to other young people.
I'm a Chrones survivor and can relate to the nutritional changes, anxiety and depression that comes with systemic disease. Blessings of love, light, health & wellness.🌺🌻🌹🌷🌸
You are a very strong young woman. I can't image not being able to eat. Hats off to you. Keep shining
Strong and positive person, I'm glad she feeling better. 💛
She's an awesome example of gratitude.
Since we're talking Ehlerss Danlos. Guys, look up Amy Lee Fisher, let's keep her channel alive and going, rest in peace beautiful girl.
I’m thankful kind and intelligent ppl such as your self are still here
Two characters in my book also have EDS, but much milder. Their joints are really flexible, as well as their skin. Also therefore they have scars from the stretching. In the past they used to have swallowing problems so they got G-tubes and they still have them to this day and sometimes use them.
You are a fighter! Wishing you health and every happiness!
I had a PICC line with HG. She is a warrior. Even though it was for a short time, it was difficult to maintain.
Hello, 👋how’re you doing
I second that. I had a piccline with Hypermesis Graviduram as well for both my pregnancies. I definitely understand.
Thank you for sharing. I'm in the process of trying to find out what is wrong with me. I was fine up until I turned 50 and had a pseudoaneurysm in my pancreas that was caused by MALS. Working with GI Doctor and going to bring this to his attention. It is so unfortunate that we have to fight and advocate for ourselves to get the doctors to look into and find the underlying problem.
I I have Chrons Disease and Inflammatory Bowel disease, and it kicks my butt.. I am so proud of her... Thats alot to deal with especially at an early age 🌟🌟🌟🌟🌟 I was feeling sorry for myself not realizing that I have it a little easier than some, I am done feeling sorry for myself, hopefully I can keep up with her... 🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽🙏🏽
My daughter has EDS-H. She is hyper motile. Has joint pain. She dislocates daily. She is recommended to take strong narcotics daily but she refuses. She goes to the gym daily to try to keep her joints healthy. I hope you keep strong. There is no cure, but research has shown that a healthy diet helps. Best of luck!!
I have the same thing, though not to that extent, especially since I have been doing pt since diagnosed. Wishing you and your daughter well!!
she is such a strong person
Makes me so scared for her if a thief ever tried steal it from her. 💜🙏 She seems like such a lovely person
Satan did steal from her.
Prayers! You are amazing 👏
She’s truly amazing!!! 🥰🥰❤️
Born different, date different, look different, feel different, think different, make different choices, and in the end be different. The main word is differend but everyone trying to fit in in society without someone to juddge them but that happens when people are biased. Everyone has something that bothers them just someone goes trough life easyer and someone not that easy or way harder. Wish all the best to every person who reading this and greetings from Serbia.👋😊
Girl your a rockstar it’s amazing how strong you are
Kelly is an amazing, young lady!
What a well spoken young woman! Hope that with her advocacy, they can make strides in research and ultimately finding a cure!
God bless you Kelly. Prayers and hopes for you.
Very inspiring young woman. It’s fantastic she is helping others through advocacy work.
Wishing Kelly all the best, God bless. ❤️✨
My grandma had crones and had a feeding tube, I miss her so much and this makes me cry cause it reminds me of her
Blessings and Peace sent to you from R.I. 🙏
Thank you so much for sharing your story. Take care honey. 💖
You know, maybe you could start a backpack collection. They obviously need to be able to hold and support all your equipment, but have an array for different styles and colors and seasons. It might be another way to embrace the situation and make it your own in a way. It’s cool if you’re not for that. Either way, your story is definitely inspiring and power to you!
The person who is reading this comment, I wish you great success, health, love and happiness 💖
Tnx i really appreciate u wishing me d best tho u know nothing about me. Tnx very much and d same to u.
@@hellenalexander4909 You’re welcome!💕
Thanks, same to you❤!
She is so smart the way she speaks about her condition is amazing she knows so much & speaks with such confidence.
As someone that suffers with EDS3 I get it. You are amazing!
Ur a beautiful person inside and out I think this is amazing. U are a very unique person I am blown away
Very impressed by this young lady!
Her hair is gorgeous!
Life cannot be defined. Different issues of life, stay strong sweetheart.
you’re from my home state yay Arkansas go go go!! Thanks for that advice that is really good advice never thought of it that way I disabled too so TY
Huh, i remember reading something really similar to this. Anyone who has to deal with this is really strong.
Definitely sending u prayers 🙏 ❤ ur a strong woman n so proud ur helping others hun 💖 💗 💕 xxxxx
ooh god she is so cute. wish to hug u lady🤗. sending more prayers for u
I regularly watched Chronically Jaquie with a very similar condition for a long while until I learnt she had passed away in hospital not from the condition itself but because her feeding tube had strangulated her intestine 😳😳 I hope they pay better attention to that not happening to more patients
I knew she died but thought it was from a stoma issue, not her intestines being strangled.
@@kokuhakuqiun4215 the stoma was connected to the feeding tube inside her body and (I can't find it/any more/rn but as far as I can remember) the feeding tube had gotten tangled around an organ which caused death 🤔🥺
Hi how’re you doing
Hi how’re you doing
Wow you are so positive,I pray to GOD to keep you safe
Yes, that's an young woman that we should have a lot of respect for incredible....
Unbelievable how far the medicine is these days. I m not sure if it would be possible for her to live such a normal live a few years ago. Wish u the best Kelly
A few years ago was just like today what are you talking about
Wow labs every week, it’s great they take such good care of her. Probably much better than it would be here in Sweden, health care sucks here especially for chronic and rare conditions.
Kelly, you are awesome.
It is not easy to deal with this but you are strong and I am glad that you are an Advocate person ❤️ stay positive
She is a smart beautiful young lady. Blessings.
Certified Gold!!!!!!
You go girl! 👏😁
Thank you so much for sharing! Also, people don’t understand that people who are capable of walking may need a wheel chair. I use a walker out of the house and a transport chair when my symptoms flair. I’m not sure if a wheel chair is in my future.
Brave,strong and beautiful,that's what you are 😊💪👍👏
I also have EDS and I get my nutrition and hydration through my feeding tube and port!!
She is a strong women and beautiful person she is nice and grateful I Love You
Wow. I did not know EDS could affect involuntary muscle and tissue especially internally. She is an amazing person 🫶
Your a fighter hang in there you will be fine bless 🙏💯💯
So much of my social life revolves around food. I can't imagine not being able to eat.
Incredible young lady.
Amazing young woman.
Not going to lie
Shes absolutely beautiful and so positive as well
Such an awesome girl !
You are strong as a person 💓💓💪
love
And you know what's
This young lady is still going
Sorry to hear about your troubles
I hope you get to live a fulfilling life
God bless you
So pretty too
Can never get my curls to look that good
Strong girl 💜 🙏🏻🙏🏻🙏🏻 💜
I just lost my beautiful mum 14 weeks ago to an abdominal aortic aneurysm. I was diagnosed with EDS in 2014, it’s generic so usually it comes from one of your parents - I *knew* my Mum had it, I have many memories of going to hospital with her as a child with dislocated knees having steroid injections, having severe back issues, gastrointestinal problems etc. She was diagnosed with early onset dementia 2 years ago, I kept telling Drs she had EDS & I believe they’re linked & I was ignored, she’d had several operations for very severe varicose veins over the years (also vascular), & then she was diagnosed with these aortic aneurysms (vascular too - anyone sensing a theme yet….?) Not one Dr would listen to me. Not one. Yet when she died, the corona mentioned me in his report saying I *need* to urgently see a geneticist & I need regular check ups. Whether I’ll receive either is another matter. I KNEW my mum had vascular ehlers danlos & no one would listen - it shortens life span, comes with a whole host of complex health issues, some of which I’m only starting to shoe now (but I learnt some sufferers can get symptoms later in life which my mum did, tenfold).
This condition is exhausting, especially here in the UK where Drs just don’t want to listen or learn. This beautiful young woman is right, knowledge is power, but how far can it take you when it’s not being reciprocated? 😔 I lost my mum because no one would hear me. I can’t bring her back.
You’re a truly strong young woman, & I know the battle, I truly do. Keep fighting the good fight. X
I was wondering kind of a similar thing. Knowledge is power, but if people doesn't want to believe you can tell them all you want, they will keep on denying. Many persons and doctors too just deny the existence of EDS and other so called invisible illnesses. I'm not diagnosed with EDS (it's much more difficult in Italy where I am), but I have hypermobility and a host of other symptoms including chronic fatigue. The biggest problem is people, especially doctors, not wanting to believe these conditions exist. They want to make you believe it's all in your head, so you can't get proper treatment.
I'm very sorry for your mum, hugs... vEDS is very tough, unfortunately there's not much you can do even if you know before.
So sorry to hear about your mum. I’m struggling to get the NHS to listen about the possibility of EDS too. How did you get diagnosed/ tested? Xx
🙏🏼
I have abdominal pain and indigestion chronic along with pots.