Living in a Body that's Melting (A Rare Connective Tissue Disorder) 

You can check out Kayley's music on SoundCloud at linktr.ee/kayyleyy

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

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.

I honestly really loved when she said “I will do everything in my power to live the life that I chose to live”.

My heart goes out to this girl. I hope she gets the love and respect she deserves in life.

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. ❤️

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!

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)

She is such an empathetic, bright, and intuitive young lady and she has impeccable communication skills.

She is very good at expressing her thoughts ; that's awesome!

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.

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!

"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. 💙

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.

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.

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

She is so adorable. Her laugh. Her humor. She’s so wise… ❤

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. ❤

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.

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!❤

Her outlook on life is so true, this honestly helps me a lot right now

This young lady has the most incredible heart I've ever seen. We could all learn from her, including myself.

She is so beautiful! Her view of her world is beautiful. Her perspective humbles me and her humor is wonderful.

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 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!!

Kayley is just the sweetest.

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.

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

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.

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❤❤❤

Kayley is so fluent in describing herself. I bet she is a wonderful song writer.

She is so wise for her age, I really admire her.

She's so sweet 😭

"Jacked up" is my new favorite term.

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.

Kayley is such a mature, genuine, good-natured person. It is really wonderful to hear her perspective

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 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.😁

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!

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.

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! 💓

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!

You have a wonderful perspective, Kayley, and it was nice to get to meet you so to speak through this video.

She’s so pretty.

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. 🙏🏼 ❤

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.

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.

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.

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 💜

I want to hear a song of Kayley The way she speaks already sounds so poetic

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

Thanks for these wonderful videos that you make. You bring attention to these people’s problems in a very caring and sensitive way.

Kayley seems like such a lovely human being! Her hair so cute too!

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 🌿

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 🫂

STAWPPP HER EYES ARE SO FREAKIN PRETTY AND HER SMILE IS GORGEOUS

You are very educated and intelligent and you talk fluently

She's so pretty and well-spoken!

She is beautiful.

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.

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.

I love her outlook and philosophy about enjoying every part of life. What a blessing this interview is

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 love her positivity and optimism...seems like an awesome person!

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 💛😊

A supreme and beautiful observer! So rare to have these perspectives. We all should fell so lucky to be blessed with this life.

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.

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 🙏

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 an inspirational young woman you are, Kayley! I loved meeting you through this video. I wish you all the best! 🫶💜

She has big love for the nature, that's awesome.

She’s the personification of deep thought and genuine inner beauty. An absolutely wonderful girl, inside and out

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 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.

❤ 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) ❤😂

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 🌹

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

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."

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 ❤

Kayley looks different. Yes. And she looks beautiful! I absolutely love her passion for life. Respect and hugs from Vermont ❤

What a wonderful additude she has! She's a very strong young lady.

❤ Much love kayley! ❤

What a lovely intelligent young lady. Inspiring !

Such a beautiful interview! What a fabulous outlook on life! Well done on the interview.

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❤❤

She is super honest, super self aware of her condition, and super sweet. She's also a cutie. Rock on, Kayley. Wishing nothing but the absolute very best for you.

You seem so awesome Kayley. I’m almost in tears listening to you speak with so much beauty and truth. You’ve really done an amazing job here at capturing how to move through the world with resilience yet softness simultaneously. As someone a few years older than you who has been very depressed for a long time, just know your words have resonated with me and make me want to look at my life from a different lens. Thank you for sharing your story and your wisdom with us 🩷

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!

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. ❤

Your compassion, understanding, and simply listening in these videos has really helped soften a lot of hard edges I used to have. These days I find myself yearning to be empathetic and understanding in all of my interactions with my family, friends, and random passers by. Thank you so much for inspiring change in me.

What a wonderful young lady! Is be proud to be her parent and honored to be her friend.

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!!

One of the most real & immediately articulate girls. So grateful that I got to witness her telling her story. Wise girl ❤

I absolutely loved watching this and hearing about her life. She's such a genuine young lady who deals with her difficulties with poise, honesty, and humor. For a lot of people the world feels dark and empty, but it's wonderful to see someone facing so many challenges who still feels passion, excitement, and finds beauty in the world.

I so appreciate hearing your story, Kayley.

I wish her all the best! ❤

I think sharing our stories is so helpful. I am struggling emotionally right now and hearing the positive messages from a person who has overcome so much is very uplifting. Thank you for sharing Kayley ❤

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.

" In love with the world " how cute! I wonder how old she is. I was very disappointed by the ending though. I feel like she wasn't finished talking and there were no closing questions or comments. 😕

Kayley you are a beautiful luminous being. Listening to you was very inspiring.