Living in a Body that's Melting (A Rare Connective Tissue Disorder)
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- Опубліковано 1 тра 2024
- Kayley is diagnosed with a rare connective tissue disorder known as Loeys-Dietz syndrome. This impacts every part of her body including the internal organs. People with Loeys-Dietz have a life expectancy of around 37 years old, and Kayley is a young adult in college. She has learned that it is okay to grieve a potentially shortened life, but Kayley is also dedicated to making the most of however many years she has on this earth.
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You can check out Kayley's music on SoundCloud at linktr.ee/kayyleyy
it's so beautiful!
😊
the emotion that pours out in her voice!! / her music is so special - her art is made of pure love.
You are light. ⏳
Her voice is absolutely angelic 👼
Hi! I'm a 31 year old woman with Loeys-Dietz Syndrome! I consider every one with LDS as a member of my family. I love all of you so much. You're so damn strong.
does it ever get annoying clarifying you're not a latter day saints?
@@MountainJohn Came here to say this same thing lol!!
@@MountainJohn😂
Why does she eyes so very far apart? How come she?
Out of curiosity Were you ever initially diagnosed with EDS or another CTD? Also is it a TGFBR2 mutation you have?
Even if she doesn't feel like it, I genuinely think she looks beautiful.
It's so sad that someone who loves so much has to go through something like this
She’s absolutely adorable
The universe had to nerf the good people somehow
She is! Uniquely beautiful. I honestly feel like she could model
She has big beautiful eyes!
I think shes pretty 🤷♂️
I have Ehlers Danlos Syndrome, basically a sister disease to hers. Turning 40 next month I worry about the future. Bless her heart, she’s so positive. ❤️
Hey there fellow zebra! I have eds too and just turned 38. I also worry abt the future. Weight lifting has been a lifesaver for me. My eds affects my digestive organs, hormones, and bones mostly.
Same but I’m turning 20 next month and I was born with clubfoot too.
@@summersalix Nice to meet you! My digestive system is very affected. Subluxation of my hips and ankles, it’s a very invisible disease. You’re right though, staying active helps. I need to be more active.
My skin though, that’s probably the most visible sign. I bruise very easily and my skin is very soft and stretchy.
@@malanamarie5206 do you know what type you have? I haven’t had the genetic testing done but when I was diagnosed there were three types. Now there are over a dozen! It’s crazy how undiagnosed these diseases are. Even the most mild diagnosis could help someone out with life care decisions. I hope you’re well.
@@nautilus956 nice to meet u too!I'm so sorry u are going thru so much! The subluxations u mentioned can be very debilitating indeed! Kudos for wanting to be more active! You got this! 💪
The gi system is definitely a daily/hourly issue for me and I'm sorry it's given u such troubles too! I had to have my colon removed a few years ago due to organ prolapses (which started in grade school), obstructions, and nerves not working, basically making it impossible for me to go to the BR. I have an ileostomy now, but that caused struggles w stoma prolapses, hernias, my small intestine twisting and telescoping, and blockages. In the last 2 years, I've been hospitalized for prolapses and obstructions 7 times. I have to be very mindful of fiber and what I eat/drink, but even then, complications can occur. Ugh, I miss salads but not worth the pain and potential ER visit lol. I hope u are hanging in there! 🤗
My heart goes out to this girl. I hope she gets the love and respect she deserves in life.
I bet her average experience in life is compassion and love from most ppl.. compare that to the average person who gets wrecked with the harsh cold nature of humanity.. god evens things out. I would say she has a radically higher chance of going to heaven, a deeper more meaningful existence and feels radically more love and acceptance than the average person. And that’s good, but what does it say about the way we treat the average human being?
You did just that the best way a stranger can, by leaving a positive comment and taking the time to empathize 🙏🏾💪🏾❤️
@@user-bg2md4dv8w you sound naive. A lot of people with disabilities experience a lot of abuse
@@user-bg2md4dv8w go out side bud.
Me too
This is such a cruel disease. We had a differential diagnosis of LD for our daughter but it turned out to be Ehlers Danlos Syndrome vascular. She made it to 30. Melting is exactly how I described her illness as well. We did the same thing....lived every day with purpose so not a minute was wasted. It's been 8 yrs and the loss is horrible, but not as awful as her pain and suffering was. Sweet child, sending you a mother's love who really does understand what you are up against. (gentle hug)
I'm sorry for your loss 😢❤
@@erinaa9486 Thank you for your kind reply.❤🩹
I’m so sorry for your loss. May her memory be a blessing.
It sounds like you gave her a wonderful life, and that she made you have a wonderful life too
I’m so sorry for the loss of your daughter. I have hyper mobile Ehlers Danlos Syndrome. Vascular is so much worse.
I honestly really loved when she said “I will do everything in my power to live the life that I chose to live”.
It ended way too soon. Kayley is such a profound sweet soul with the cutest smile. It was a pleasure listening to her, she’s wise beyond her years. May she live up to 100 and may she keep making art and enjoy the world because the world needs her!
SBSK doesn't do update videos but they absolutely should.
@@chreen955 yes they do? they also do updates on their community page as well on youtube. there are a couple of videos which are update videos towards a person!
@@chreen955they have done a few updates before!
Occasionally I have seen updates a few years later.@@chreen955
Such an awesome girl!
She is such an empathetic, bright, and intuitive young lady and she has impeccable communication skills.
And her friend too. They are both very profound and kind young ladies.
"I have the body of like a 75 year old"- I completely relate! Somebody like me! I would totally be her friend! I was tested for Loeys-Dietz syndrome because I have a lot of similar symptoms. Mine turned out to be Ehlers-Danlos syndrome (which is a different connective tissue disorder). It's so hard to have an illness like this because people will think it only affects certain parts of your life, but connective tissue is EVERYWHERE in our bodies and any connective tissue disorder affects every part of your body. It also often comes with many comorbid disorders. Also, seeing your friends with your disorder pass away is so freaking scary and I'm glad she's talking about it. 💙
I have ehlers danlos syndrome too love meeting other with it too.
I hope you get to know each other and become besties ❤ Have a great day 😊
I have Ehlers- Danlos syndrome too and I often have to educate people because they don't understand that connective tissue is 100% everywhere! I also feel that my body is "melting" from the inside out....which it is according to doctors. Wishing everyone with rare connective hereditary diseases gets the chance for a better life because we as a group are extremely misunderstood.
I also have ehlers danlos
@@laurascruggs4135
Me too😊
Thank you so much for this interview. My husband and his side of the family all have Loeys-Dietz Syndrome Type 3. We always thought of reaching out to do an interview to spread awareness for this condition. Thank you Kayley for being brave and opening up
❤❤❤❤❤❤❤
I'm turning 33 in a few months and I was diagnosed with LDS when I was 18. A bunch of surgeries, a mechanical heart valve, brain aneurysm and whatnot but still going strong. Kayley is a real inspiration and should be for everyone else aswell!
She is very good at expressing her thoughts ; that's awesome!
yeah he's pretty intelligent lady, her speech and thought expressions are amazing. i concur
She SEES the world, she doesn't just look at the world, and amble through it. She appreciates and values what she has. What an inspiring person.
Hello Kayley! My daughter and I have a condition which is cousin to yours, Ehlers-Danlos syndrome, and my partner has another one, Marfan Syndrome. We're grateful to you for having the courage to speak about connective tissue disorders and bring awareness, and am sorry for how much this impacts your life.
16:43 this about anticipatory grief really struck me because my husband and I are going through this at 57. We both have issues that affect mobility, so have had to come to terms with missing out on travel and experiences we always wanted. It's hard. ❤
My mum got diagnosed with Loeys-Dietz Syndrome and we never heard of anyone with that condition before. She passed away 14 years ago because her mitral valve "melted" and flipped on itself!
My little brother has the same mutation of gene but I am grateful that I don't
This made me cry. She is such a beautiful person and deserves... she deserves to not have a ticking clock counting down her life. I hope she has wonderful experiences.
I feel the same like this just SHOULDN’T be. 🙏🙏🙏
We all have that ticking clock. Your comment is beautiful. :)
She is so adorable. Her laugh. Her humor. She’s so wise… ❤
wow, she's amazing. she is playing GUITAR! i taught myself 5 years ago. not only is it painful for healthy people at times, it's also so good for her hand muscles. what a testimony to her resilience. she's so articulate and emotionally intelligent. go dark humor!❤
What an amazing clarity. I am 2 years into a formidable auto-immune disorder and this lady is such an inspiration for me to accept my predicament. Thank you.
love ur icon !
I went through something similar for the last 7 years and got so desperate I started trying diets recommended by what I thought were 'crazy' people. First I tried cutting sugar and only eating while foods, then AIP and instantly saw a gigantic improvement but not full remission. Then I tried the carnivore/lion diet and I'm finally in remission! I'd definitely recommend at least looking into it both on here and and available subreddit or forum for your particular disease but ultimately autoimmune diseases are all triggered by the and thing - inflammation. Best of luck!
@@TheRancidPenguin🙄🙄🙄🙄🙄
So beautiful, intelligent, emotionally mature, humorous and can cook, she is so awesome! I love her empathy and perspectives on life, deep, grounded and present.
She is so wise for her age, I really admire her.
This young lady has the most incredible heart I've ever seen. We could all learn from her, including myself.
Her outlook on life is so true, this honestly helps me a lot right now
I feel the same, she’s literally so beautiful inside and out
She is so beautiful! Her view of her world is beautiful. Her perspective humbles me and her humor is wonderful.
"Jacked up" is my new favorite term.
I think "jacked up" in terms of "messed up" has been around since the 90s, probably earlier.
@crunk1 I have never heard it before. I love it!
@@cats1900it's also used to describe really muscular or ripped physique. Like wow he's super jacked up.
Yeah we were definitely saying it as kids in the 90s, I still say it now in my 40s lol
@@nessae354 ''Jacked up'' in a sentence like that is usually used to describe someone on roids, natural people aren't jacked up.
You have a great personality, my youngest son has MLD, metachromatic leukodystophy and they say they live until maybe 30, he's going to be 18 and its 8n the back of my mind but I'm letting him achieve all he can, there is nothing you and he can't achieve. He is graduating this month with the Merritt of distinction and 3 certifications. Do well in college, I am praying 🙏 for everyone who has any disorders. God bless everyone.
I'm praying for your family right now.❤
Praying for your family …. 🙏
She is so sweet and well spoken. I have never heard of this disorder that was so kind of her to share so much and educate everyone. I hope she gets so much love and joy out of life!!
I also have a connective tissue disorder a lot of people don’t realize that if you have a connective tissue disorder, it is more likely than not that you will have a bunch of other disorders as well caused by the wacky collagen. I had clubfoot when i was born and had to have surgery and now my feet are the only thing on my body that doesn’t bend too much they actually barely move. Luckily I have a mild connective tissue disorder.
She's so sweet 😭
This girl is so amazing. Not only is she incredibly beautiful, she seems like such an awesome person and friend. I pray she lives a long and happy life.
I was looking for this comment 🥰 I honestly think she is so beautiful!
She is pretty, but "incredibly beautiful" is a stretch... unless you're referring to her character?
Kayley is such a mature, genuine, good-natured person. It is really wonderful to hear her perspective
Kayley is so fluent in describing herself. I bet she is a wonderful song writer.
❤ I agree; I think she would be enjoyable to listen to if she read books too.
shes such a sweetheart. i love this series, its so nice someone takes their time and talks to these lovely people, it warms my heart. keep it up❤❤❤
True, but you ain't watched all of video ❤
@@ShockerzGaming im watching it right now :))
@@spring5577good ❤
Amen gods children are awesome 🙏🙏🙏🙏
It's so nice that these people take their time to talk to Chris so that us random people can learn more.
Kayley is such a cutie and so sweet. She has a lot of emotional maturity. She thinks outside of herself and has empathy for others. She has a tremendous attitude and I love hearing her talk about just everything!
Gosh, I'm so sorry she's got to deal with this but she's definitely making the most of it. I love her story about starting a new middle school wearing the halo and telling the kids she was in a car accident...instead of the real reason she had to wear it.😊 I thought that was adorable! Most middle schoolers, to be honest, would probably not be so clever and dig into their sense of humor for a response. Gotta respect her for that. A sign that her emotional maturity started young.
Gotta give her kudos 👏🏼 for keeping her thoughts together while Mr Chris compassionately listened to her with his beautiful, blue eyes. My thoughts would wander...but she kept it together! What a pro.😁
Completely random but she sounds so much like Rory Gilmore. Kayley, you’re so strong and have such a beautiful perspective on life. Thank you for sharing part of your story with us! 💓
What a wondrous human being this young woman is-she has a beautiful spirit, and extraordinary depth and insight. May she stay healthy! 🌼
Kayley is just the sweetest.
I absolutely love her attitude about this. My disabilities aren't outward showing, but I have the same sense of humor about them. You have to, I've been sick for 10 years and have gotten 4 diseases in 8, and I'm 26. You have to be able to joke about it
I also have a connective tissue disorder that I’m still getting assessed for (suspected hEDS), so I really enjoyed this video in particular - being a disabled artist is not an easy path, but it’s a life of passion and love and I’m inspired by the zeal for life shown in this.
omg i've seen her singing on tiktok before, i love her so much!! kayley PLS put your music up more, sing more, we wanna hear your beauty!
For a second there I thought she was going to say "people in the wild".
To Kayley: You seem like an amazing lady. I had an accident and am going to be having hand therapy soon. If things get tough I'll remember you and be extra strong.
Good luck ❤
@@robbieboydudeguyThanks.
You have a wonderful perspective, Kayley, and it was nice to get to meet you so to speak through this video.
I hope she knows that the people who love her would want to share the load of grief with her, instead of it falling all on her. It’s actually one thing I’ve been working on sharing with my family, and I always feel better when I do. She is a beautiful soul who will live a beautiful life!
She's so pretty and well-spoken!
Kayley seems like such a lovely human being! Her hair so cute too!
What I love about these videos is how it's "human first, syndrome last" and while the inspiring and courageous lines are always welcome, I find the more "mundane" and "ordinary" ones resonant. Here we have:
"If I had something to drink [I'll talk about my fears of mortality]." 🤣
"She made a lemon cake before this, and we're going to invite friends over to eat it."
"I love nature, love, life and music [laughs] I'm such an artist."
"We met on the first week of school and we do everything together. What do we do together? [Both freeze, then laugh]."
"We like nature and flowers. We frolic in flowery fields."
she reminds me SO much of claire wineland, and trust me this is one of the highest compliments i can give 💜you are awesome Kayley! sending love from someone with another connective tissue disorder 🫂
I agree. Oh gosh I'm glad people remember Claire. Can't think of her without tearing up.
@@PS-qn4ozMe too. I think of her often, actually. She really had an impact on so many people and in that way, she's still very much present.
@@margodphd Beautiful thought, absolutely. Love to Claire and Kayley and all of us lifting each other up.
@@PS-qn4oz i’ll never forget her, i think of her often and just cry but also smile because of what a light she was and continues to be. she truly changed my outlook on life as someone with chronic illnesses
@@finleygray417 I'll always remember that video where she said "I'm dying" and took a sip of tea or something and then started laughing. If she can do it, we all can. If she can be that brave with the worst diagnosis, we can be brave with lesser problems, too. Wishing you healing!!
That sucks. She is beautiful inside and out. Praying for continued strength and encouragement. “Continued” because she already looks strong and positive. Good for you girl.
I want to hear a song of Kayley
The way she speaks already sounds so poetic
Such a beautiful girl with such a beautiful outlook on life. I hate that people bring her down, but I love that she still has so much love for the world. A true inspiration 💜
Kayley is a beautiful, intelligent, articulate and positive human. I’m so glad she shares a little of her life with us here. Always learning something new from this channel. Thank you. 🙏🏼 ❤
You are very educated and intelligent and you talk fluently
She has big love for the nature, that's awesome.
It's always striking to me how those that were dealt the worst hand in life seems to love life the most. I hope an effective treatment is found for those with the condition.
Kayley is a wonderful storyteller and her voice is so pleasant to listen that I’d listen to her talking for hours! Good luck girl 🌿
Kayley has a very positive attitude about life and I'm sure would be a wonderful friend...
I love this young woman. Her spirit is radiating through this video. I wish more people in the world saw things as she does. This is very inspirational.
I've EDS, a collagen disease but it's not so terrible as her loeys dietz syndrome
This girl is so mature, courageous and loving
She's AMAZING 🥰
she accepts that her body doesn't want to follow her aspirations and her dreams
she accepts things like they are
She wants to live the best life, the syndrome will let her live....
Lessons for all of us 👍✨
Bravo 👏
We are with you
Beautiful Girl 🌹
I agree, unless it’s the vascular EDS.
I often wish I could snap my fingers and heal people. It gives me chest pains that I can't. :( She's too pure.
I wish we could all pray for a miracle. If anything, she deserves more than one!
We wish you could snap your fingers and heal us too. My mom just doesn't understand how much pain I go through. I dont know what it is like to be pain-free without medication, and even on the medication, I still feel pain. My mother does love me very much, but sometimes I get pushed too hard to do things
Thanks for these wonderful videos that you make. You bring attention to these people’s problems in a very caring and sensitive way.
She is beautiful.
I think so too. I don't think she looks any different then anyone else.
Your channel is fantastic ! I am so sorry for this kids😢. But your channel open a window us to them and hopefully them to us 🙏
She seems like a very beautiful person in terms of her personality, outlook, and emotional way of dealing with her situation. Honestly, as someone who's chronically ill, severely, unable to work, but probably will make a partial recovery yet remain ill in the future, I've been feeling very lonely on a romantic/intimate level for a good while, and it's eating me alive. Watching videos of fellow chronically ill people just makes me think "I need to find someone else who UNDERSTANDS ME". When I saw her talking about the back pain, fatigue, health anxiety, it was like she was DESCRIBING ME!!! It's sad but true that people who don't experience these kinds of things long term simply can never know, this obviously doesn't mean I'm gonna just confine myself to people in similar positions to mine, however it does get lonely, but it feels really good to hear that someone else can relate, even though I wish they didn't have to :( Seriously man, if you're reading this Kayley I hope you live a long life, with lots of love in every respect from those you know, and get to achieve your dreams of writing music. You seem like a genuinely super cool person.
A supreme and beautiful observer! So rare to have these perspectives. We all should fell so lucky to be blessed with this life.
There is so much more wisdom in this young lady than in a lot people of my age. Including me. Much love from Bavaria!
I loved hearing Kayley; she is a delightfully sweet young lady. She spoke very eloquently and seemed to be well educated. This proves she does not let her health issues keeping her from living life. May the Lord bless her and her doctors in their quest to help Kayley.
I love her outlook and philosophy about enjoying every part of life. What a blessing this interview is
What a kind and bubbly person Kayley is! I really admire her strength. I wish her all the happiness in the world and really do hope she is always surrounded by beautiful friends 💛😊
I love her positivity and optimism...seems like an awesome person!
Kayley looks different. Yes. And she looks beautiful! I absolutely love her passion for life. Respect and hugs from Vermont ❤
What a wonderful intelligent young woman. She’s battling awful odds but still is a positive thinker. That’s what will keep her going. God Bless you. ♥️👏
What a lovely intelligent young lady. Inspiring !
❤ Much love kayley! ❤
What a wonderful additude she has! She's a very strong young lady.
Honestly, I think she looks really good. I like the way she communicates and how positive she actually is. She is very strong and we all need to learn a lot from her. Best whishes from Spain ❤
❤ she is so very beautiful and such a wonderful inspiration. Hearing her experience, strength, and hope was most lovely part of my day. ( recovering from lumpectomy and radiation today) ❤😂
What an inspirational young woman you are, Kayley! I loved meeting you through this video. I wish you all the best! 🫶💜
I think she’s beautiful. True beauty shines from the inside out. Great outlook and grounded.
Kayley is a beautiful soul and her love of music,art,nature and life is wonderful.i hope and pray that she can realise her dreams❤❤
Kayley, I admire your capability to express your thoughts and your emotional inteligence... Thank you and SBSK for sharing another beautiful story with the world! I am also happy that the comment section is opened again... :D
She is so well spoken and intelligent, but also Chris is such an incredible interviewer; asks the questions we might want to know about the disorder but also makes sure to ask questions that are very human so all of us can see that they are people just like us.
So many of us with EDS here. Can't imagine how difficult it is to live with Loeys-Dietz syndrome, which I had never heard of until now- but what a beautiful outlook on life you have Kaylee. You are also gorgeous and a very bright light shines from you! I hope that you get to live a long and happy life ❤
What a wonderful young lady! Is be proud to be her parent and honored to be her friend.
Such a beautiful interview! What a fabulous outlook on life! Well done on the interview.
I feel like listening to her and looking at her more. There's just something about her. She's so well spoken and charming and likeable, and she has this special... I don't know, presence? And that pretty smile and contagious laughter, too. She's someone you could easily fall in love with. And how great it is that she did this interview, so people can learn about the syndrome. Kudos to her.
I’m just over a minute into this video, but all I needed was the first sentence or two to LOVE her. That kind of positivity is SO rare and admirable (I am generally much more on the negative side). And then just her quipping like “Im SO in love with life, like I’m so dramatic”. Loooool YES. I’m gonna keep watching but I absolutely need this lady in my life! What a friend she’d be
She also has a really cute, casual style. ❤
Kayley you have beautiful soft features; a very pretty girl with emotional intelligence and insight. This was so educational to me. ❤ thank you for inspiring and I hope you two keep frolicking!
she's looks like a fairy 🧚🏻♂️ I also love her thoughts about life
I'm 66, and here I am. I have health issues, but I still am mobile and lead a good life. I have a terrific pain management doctor and he has helped me so much. I feel better than I have in years.
Awesome Video!!! Kayley has a beautiful outlook on life!!! I was shocked when she told what college she attended!!! My Granddaughter recieved a full scholarship to go to Belmont!!!! It is a great college for Music!!! Thanks for sharing!!! God Bless!!!
Kayley is so beautiful with such a sweet soul. Her blue eyes are gorgeous.❤
Edit: just listened to her song Not a Reason.. she has such a beautiful voice. I really loved the song!!
I so appreciate hearing your story, Kayley.
What an absolute sweetheart, hurts so much seeing someone with so much love struggling with these issues and unable to do certain things that she wants to do it again, I wish there was something to prevent further "degradation" because she deserves so much happiness...
She’s so beautiful inside and out! Such a kind beautiful soul
Kayley you are a beautiful luminous being. Listening to you was very inspiring.
All I want to say is that I clicked on this video because you look adorable. And now having watched the video, I think you are even more adorable. You have such a wonderful way with words. Your philosophies about life and people and your unbelievably graceful demeanor are truly endearing. You must have so many people who adore you - maybe whether you know it or not.
Same! I saw her picture and thought, she's so pretty! What a great picture of her!
Thank you for spreading awareness about this connective tissue disorder from the perspective of a researcher im actually so fascinated and you explained things really well.
Wow 9:31 Chris ❤ this is tough... I'm so sorry for your loss angel 👼🏼 I'm glad Chris knows how to navigate This ❤
I wish her all the best! ❤