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.
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
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.
@@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! 🤗
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?
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)
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!
@@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!
"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 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.
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'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!
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
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.
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 ~ Only SOME Connective Tissue Diseases are Auto-immune. However, Loeys-Dietz (& Marfan & Ehlers-Danlos) are GENETIC, you are born with it, it is in the DNA. A person can have both though! I have Rheumatoid Arthritis (RA) and Ehlers-Danlos (EDS).
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. ❤
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!❤
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.
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.
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.
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 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.
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 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 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.
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 💜
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! 💓
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.
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. 🙏🏼 ❤
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.
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 🫂
@@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!!
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. ♥️👏
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 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
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 💛😊
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.
Small world. I also have a connective tissue disorder, though not as severe as Kayley, whom I see as a beautiful young woman. So articulate and well spoken. Thank you for sharing her journey. ❤️🙏🏻🌎
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. ❤
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 ❤
I loved her relationship with her close friend, so in tuned with each other. You both glowed sitting next to each other. So caring and kind. This friendship has a beauty of its own.😊 I need to be reminded to “give myself grace”. Thank you sweetie❤
Hearing her share her experience is a blessing. My heart is so warmed by the true friendship that these two young women have. Side by side for the journey. ✨🕊
She’s so cool I love learning more about other disabled ppl! I’m still on my journey to getting diagnosed but it feels good to see others take pride in being disabled I also have a lot of health anxiety & not enough people talk about all the grief that goes into navigating constantly adapting to new health things. Hang in there ❤
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
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 ❤
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."
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 ❤
This channel teaches me so many things, so many things I get to know through this channel like the medical conditions that people go through, their daily, life, rheir struggles *amazing stories respect to all the people, for going through so many problems, struggles and not giving up fighting those problems* 🙏🏻
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.
Kayley - you are such a sweet, beautiful soul…with a perfect complexion and bright, happy eyes! You are correct in that you need to live life to the fullest. There is so much to see and do out there and having a friend experience it with you, along the way, that makes you laugh, cry, enjoy the simple things - like baking, and just listening and talking is a gift. You are beautiful inside & out. Like I said - you are a sweet, beautiful soul. 🙏🏻
My heart goes out to her. I have a disorder that a few friends have passed from. My heart broke that they didn't survive it and I would sometimes wonder why I'm so blessed to have made it so far. But we are individuals and can't live our lives through other people. What God has for each of us will differ. Celebrate every day of your life, no matter what. Don't waste a minute. ** I feel so bad for her having to deal with the noise from her neighbor. That did not go unnoticed. I have those issues, too. They could have at least waited while she was filming.
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
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
30 seconds in and I was already in love with her. What an absolutely beautiful ray of sunshine yet still so real and honest. She has an incredible perspective.
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 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) ❤😂
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 🩷
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 honestly really loved when she said “I will do everything in my power to live the life that I chose to live”.
I have Ehlers-Danlos and I resonate heavily with what she said there
@@dreamerqueennotunderthemachine. Same
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 🙏🏾💪🏾❤️
@@JoshO-r5h you sound naive. A lot of people with disabilities experience a lot of abuse
@@JoshO-r5h 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.
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.
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 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 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😊
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. :)
@@Prettymapleleafonly if we allow ourselves to think that way:-) The universe is all mental.
❤❤❤❤❤❤❤❤❤
We all have a ticking clock.
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
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.
She is so adorable. Her laugh. Her humor. She’s so wise… ❤
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
❤❤❤❤❤❤❤
Wow! What is that like for you?
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🙄🙄🙄🙄🙄
@@TheRancidPenguin ~ Only SOME Connective Tissue Diseases are Auto-immune. However, Loeys-Dietz (& Marfan & Ehlers-Danlos) are GENETIC, you are born with it, it is in the DNA. A person can have both though! I have Rheumatoid Arthritis (RA) and Ehlers-Danlos (EDS).
@@stoicstrawberries *YOUR
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. ❤
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!❤
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.
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
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.
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
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 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.
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❤❤❤
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.
She is so wise for her age, I really admire her.
What a wondrous human being this young woman is-she has a beautiful spirit, and extraordinary depth and insight. May she stay healthy! 🌼
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 …. 🙏
*LEUKODYSTROPHY *IT'S IN *MERIT
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.
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!
You have a wonderful perspective, Kayley, and it was nice to get to meet you so to speak through this video.
She's so sweet 😭
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 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.
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 💜
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! 💓
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.
Kayley is just the sweetest.
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. 🙏🏼 ❤
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 🌿
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.
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!!
Kayley seems like such a lovely human being! Her hair so cute too!
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. ♥️👏
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.
Thanks for these wonderful videos that you make. You bring attention to these people’s problems in a very caring and sensitive way.
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
You are very educated and intelligent and you talk fluently
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 💛😊
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.
Small world. I also have a connective tissue disorder, though not as severe as Kayley, whom I see as a beautiful young woman. So articulate and well spoken. Thank you for sharing her journey.
❤️🙏🏻🌎
She plays and sings beautifully!!
@@Super69firebirdwhat video does she sing in?
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!
What an inspirational young woman you are, Kayley! I loved meeting you through this video. I wish you all the best! 🫶💜
Thank you Kayley for teaching me about Anticipatory Grief. My adult daughter has Parkingson's and I am 74. You give me courage.
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. ❤
one of the purest person i ve ever seen, i hope she lives a happy and long life.
"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.
I love her outlook and philosophy about enjoying every part of life. What a blessing this interview is
I love her positivity and optimism...seems like an awesome person!
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's so pretty and well-spoken!
She’s the personification of deep thought and genuine inner beauty. An absolutely wonderful girl, inside and out
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 🙏
I loved her relationship with her close friend, so in tuned with each other. You both glowed sitting next to each other. So caring and kind. This friendship has a beauty of its own.😊 I need to be reminded to “give myself grace”. Thank you sweetie❤
I honestly think she is gorgeous! Her skin is flawless and her teeth are perfect. And she has a beautiful personality, too.
Oh my goodness and I just listened to her music.. it brought a tear to my eye. What a talented and sweet soul she is.
Hearing her share her experience is a blessing. My heart is so warmed by the true friendship that these two young women have. Side by side for the journey. ✨🕊
I want to hear a song of Kayley
The way she speaks already sounds so poetic
She’s so cool I love learning more about other disabled ppl! I’m still on my journey to getting diagnosed but it feels good to see others take pride in being disabled
I also have a lot of health anxiety & not enough people talk about all the grief that goes into navigating constantly adapting to new health things. Hang in there ❤
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
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 ❤
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."
Yes this! Human first and ailment last!
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 ❤
You are a blessing! Thank you for being here.
This channel teaches me so many things, so many things I get to know through this channel like the medical conditions that people go through, their daily, life, rheir struggles *amazing stories respect to all the people, for going through so many problems, struggles and not giving up fighting those problems* 🙏🏻
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!
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.
Such a beautiful interview! What a fabulous outlook on life! Well done on the interview.
Kayley - you are such a sweet, beautiful soul…with a perfect complexion and bright, happy eyes! You are correct in that you need to live life to the fullest. There is so much to see and do out there and having a friend experience it with you, along the way, that makes you laugh, cry, enjoy the simple things - like baking, and just listening and talking is a gift. You are beautiful inside & out. Like I said - you are a sweet, beautiful soul. 🙏🏻
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❤❤
My heart goes out to her. I have a disorder that a few friends have passed from. My heart broke that they didn't survive it and I would sometimes wonder why I'm so blessed to have made it so far. But we are individuals and can't live our lives through other people. What God has for each of us will differ. Celebrate every day of your life, no matter what. Don't waste a minute.
** I feel so bad for her having to deal with the noise from her neighbor. That did not go unnoticed. I have those issues, too. They could have at least waited while she was filming.
I so appreciate hearing your story, Kayley.
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
Kayley looks different. Yes. And she looks beautiful! I absolutely love her passion for life. Respect and hugs from Vermont ❤
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
30 seconds in and I was already in love with her. What an absolutely beautiful ray of sunshine yet still so real and honest. She has an incredible perspective.
What a wonderful young lady! Is be proud to be her parent and honored to be her friend.
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.
She has big love for the nature, that's awesome.
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.
What a wonderful additude she has! She's a very strong young lady.
What a beautiful, compassionate, intelligent young woman. You have a lot to teach the world 💜
❤ 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) ❤😂
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 🩷