My Hardening Skin Is Turning Me Into A Doll | SHAKE MY BEAUTY 

♥️👏👏👏

That’s wonderful that she’s made it so far! I hope her life is and has been full and happy. Scleroderma is terrible and so difficult to handle. My friend’s sister was diagnosed in her late teens/early 20s and then it suddenly progressed insanely quickly. She passed at 28 from complications related to it. With that being my only experience with it, it’s nice to know that it’s not necessarily a “death sentence” so to speak.

thats so great to hear! your grandma is such a strong women 🥺 sending prayers !

Wow! Thats why i never trust docters. I was diagnosed with anorexia about 2 years ago when i was super underweight. They said i gonna die at 12 years. But im soon 14 and still alive (: I gained 2kg, not super much but im still trying to battle ^-^ Btw love to ur grandma!❤️ How shes right now?💕✨

@@editname8050 hoping for the best for you sweetheart! Bless you.💜 She's good, thanks for asking ✨

A true queen

Yass

iconic

Faux fur and we're a-ok, lol.

Yes she is a Queen

Ally Sha how did you get diagnosed

Born Yesterday They have certain blood test that they perform to find out which Scleroderma you have. Limited Scleroderma is the less severe which typically only effects the skin and Diffuse Scleroderma is more severe and effects the skin, organs, etc. If you think you may have Scleroderma, I would go to a Doc who is familiar with Scleroderma. A lot of doctors out there still do not really know about this disease unfortunately. Hope this helps ❤

Ally Sha how are u feeling?

Born Yesterday Today has been a good day. The sun was out, which means less pain :) Or maybe the sun has a placebo effect lol Thank you for asking ❤ How are you? May I ask if you have Scleroderma?

Bless your soul..is this cureable and can it be transferred to offspring.hope you follow your dreams sweetheart 😚😚😚

dances better than me too tbh 😂

lol same

she is amazing

iam normal and i cant be bothered doing maicup

Better than me too but that’s not saying much tbh ;-;

Bobby Tate gotta love you! Thank you! It’s how I feel!

Ur SOoO. nICE

❤️

omg it is like shes from a tim burton movie!

Bobby Tate PREACH

Embracing the inevitable

Ya that would look awesome

I'm an artist, I also build furniture and I'm a decent mechanic. I'd love to build her a totally gothic throne looking wheelchair.

@@wadeguidry6675 do it man! it's worth it and she deserve it !

@@wadeguidry6675 do it please! It would be fantastic! :-)

I could see her on AHS for sure.

Yaa true not in abad way.

Not only movies. There are lots of people with different diseases that would look sick in a metal band. Looking like a "monster" and singing in the most brutal way possible would make a great live show. It will probably boost the confidence of these people

That's mean though you didn't mean to

@@snigdhabiswas6764 how is that mean they ment it in a positive way

Stan

@@tobyjohn4682 I am a qualified lesbian too

Am not asking this to be rude but if the skin can't strach how did your mom get pregnant i think it was really hard on her God bless her

@@whatscookingwithbrendaheli481 I am planning to get pregnant 🤰

May God bless you and ur mum ❤❤✨✨

@@danielkerr4100 Nah u do though

@@danielkerr4100 Damn look at u lmao

sassy? 😂

The makeup looks pretty*

Oh come on

Zei Zei LovesGaming that’s what I was thinking

She definitely *is*

I made it 2.1k

Yeah and she should add black decoration thorns and red roses on her wheel chair

I approve of thee comment

i know!! she’s my 2nd cousin and she is so sweet whenever i go to see her

The people who suffered the most pain in life are usually the nicest. They don't want anyone to go through the emotional pain they have been through

@@briaxnaa wow

She my mom

She should make it look like the one from Game of Thrones.

She needs a second chair. For her show than. She still needs to be mobile.

It is a throne, for the queen

@Kim Essex straight copied too, didnt change up a word.

Nah she needs to walk.

I'm sorry for your loss may she rest in peace

I lost my beloved grandma because of scleroderma. At that time they couldnt diagnosed her for a year and mistreated, which also caused cancer afterwards. When she was properly diagnosed it was really late. She was a very strong woman, I miss her everyday. I really appriciate your effort on this subject. I just want to thank you, with all my heart. Be the hope for some people. Thank you, so much.

@@ozgezafer I'm very sorry to hear about your grandmother. This is a condition that definitely needs a lot more awareness. It's supposed to rare, but who knows how many people, like your grandmother, are undiagnosed or diagnosed too late because doctors aren't familiar with it?

So sad take care

EB Agent J sure lying for attention grow up

I find that when I feel down these videos remind me that others have overcome worse, and I need to be strong like they are.

She does look pretty cool and gorgeous, I really like it.

Blank Canvas Syndrome I can totally see a lot of goths/punks wanting to buy clothing she models if they were to do creepy doll setups for shoots. She is beautifully macabre and I mean that in an admiring way.

I know right??? What is wrong with people? Everyone is entitled to opinion, curious to hear what they have to say as to why they disliked...you?

I think a lot of people just disliked the video because RU-vid recommended it to them like every day even though they are not interested in those kind of videos. RU-vid can be very obnoxious with contently recommending you the same videos you never were interested in.

@Mrs E Since when is gothic white culture?

@amanda ^

amanda Or maybe they just don’t like the video? Damn, just because she’s disabled it’s like people have to like or pity her smh. Grow up and respect people’s opinions.

JoanieTiVi sorry for your loss!!

Crystal Chandelier don't be a vile person

Brandy Coomer Yeah, me too

I am truly sorry for your loss. Your dear friend will be forever alive in your memories and heart 💖

Crystal Chandelier so will other people when it happens to you

That makes us all bad assess because she is weak well thank you

@@johnpartlett3501 maybe physically. But mentally, this has made her stronger

Wow... I am 35 years old.... So young!! Sorry for your lost. Kiss to France 😉

Richie Aguilar so sorry to hear x

I am so sorry for ur loss

My grandma had it as well. She passed away at 67. She was my best friend and to see her struggle the way she did and how much pain she went through... I'm happy that she is no longer hurting. I'm sorry for your loss. She was a strong, beautiful woman. That's for sure

My mother passed away in 2013 from scleroderma.

Delilah Phillips Glad everything turned out okay for you!

Emily Draper Thank you 💜

This is the very first time I’ve heard of this disease. Thank god for youtube.

Delilah Phillips .....

Well this is a bit of a backhanded comment.

when the imposter is sus 😱😱😱😱😱😱😱📛📛📛📛📛

@@raindoset5408 😱🙀😱🙀😱

Jess B Agreed! Very insiring woman.

Mental strength? The girls hott, has a bunch of money, and has no reason not to be happy, if she was ugly it would be mental strength, but in reality she's just lucky to look hott

How to make Pizza at home dude

How to make Pizza at home my man many attractive people will take their own lives when they have a condition like this, it's not about looking good. The mind is very fragile, no matter how good you look or how much money you have it's easy to fall into depression given certain circumstances, especially circumstances you have no choice over

Carter Pewterschmidt yeah she isnt changing herself to look like a fake plastic barbie doll.

I agree totally! Love her!

Marcia Ham my drs currently think I have it and lupus ... how did you find out ? I was diagnosed as fibromyalgia for 10 years I think it’s was actually lupus and guessing scleroderma could have started the last 2 or less years . I’m going to a ra dr in March

They're both cute...

@@monroe7403 he never said they weren't 😉

@Dien M rude

@Lolo Lo That's your opinion and that comment saying him was rude is because they said if she didn't have the disease, she "would" be pretty. How is that a compliment?

ikr like wow

Well it's never easy so of course you gonna wonder "why me" at times, getting this strong and just accepting it is a battle of its own.

Clarissa Jackson It’s hard, bring diagnosed young. You don’t know who you are, you’ve not had the chance to fully create that identity, and suddenly you’re The Sick One. Especially when you have healthy siblings, but you got the familial illness, especially if you get three or four but everyone else is completely healthy, you wonder why out of all of them you were sort of singled out genetically. I was 12 when I was diagnosed with chronic pain, kept having new problems come up and slapped with new diagnoses. I was basically home bound within three years. I’ve still never gotten better, and am faced with the risk of passing all of this on to my kids, knowing the damage it can do. It messes with your head when your life is consumed by health issues. Just going outside, in the sunlight, and having something to eat just because you want it at that moment, is so difficult, and people do it every day without even thinking. And there are some people out there who still think that illness is a sign of wrath, like you’ve done something or will do something to deserve it. Like when women miscarried, society as a whole used to believe it was because she did something morally wrong. That’s way less common now, but it still exists. It can mess it up if you don’t have a strong sense of self. But you can turn your pain into fuel, make your limitations your strengths, and find ways to break free every now and again. I’d never have discovered my writing if I’d been able to be active physically instead of staring at walls in the dark for days on end because of migraines. I’m also making videos to start posting on my channel about pain and coping methods and how to deal with family members with pain syndromes and how the new laws coming down are impacting us (there have been over 20 suicides related to them). So it’s not the best life, maybe, but at least having a purpose helps.

"why me" is honestly super rude though considering you are basically asking "why didn't this happen to someone else" which is a shitty way at looking at something

Lily & Ian TRUEEEE

So true ! ! !

Wavvy because she's making the best of having been dealt a bad hand? How is it NOT good that she's making the best she can out of her life every day? That's the point of the video. She's fighting. Don't pity her.

Sameeee

Wavvy "her" best life. not "the" best life. its carefully worded. chill

I'm a punk and I love seeing other alt people out there.

@@fueledbypaintwater 🤗😃😊

Truth well in my opinion,

Pretty? No. Kind? Maybe.

shes NOT real! Ai return to plastic! stolen red reign! murderous red reign. no mercy. return to whence you came~ the nothing. down with all Ai! down with all Ai! down with all Ai!

You like the make up and mask she puts on, Just like 90% of women out there because they are easily brainwashed into thinking they must have it.

Truth don’t be rude

J a s m i n She is...I like her...

II Killmonger II the truth is hard to take

J a s m i n i did ur 501 like

Sun the Flower no it was a channels name

Amanda Wilkerson ikr!! She's so strong and here I am complaining about my everyday life😩

My thoughts exactly..I feel selfish,.

myozbubble if you feel inspired to do that please keep following your heart. God often gives quiet nudges rather than burning bushes. She may be praying for help right now.

myozbubble Please look for her. You'd be surprised at how easy it is to find people nowadays. As a disabled person, thank you for your compassion. 💙

You are an ANGEL. The world needs more people like you.

Just lupus? This is highly misinformed and ignorant to say that. Lupus can be very serious and fatal. I am on chemotherapy for over 5 years with all the side effects! Please never compare illnesses and judge which one is worse to live with. All of them are horrible!

Diana Isajeva I’m pretty sure cancer is worse than a cold.

Leah Etter it's very rare... But becoming more known. My mom started a support group in our town. There is a schleroderma foundation as well.

A friend I know lost his mom to this disease. It's hard to watch as everything hardens over time but she fought really hard ...I hadn't heard about it until I saw it for myself. I commend anyone who is a caregiver especially, keep strong as you help your loved one go through this...

I've never heard of this thanks for telling me

Leah Etter Mom stayed strong for 10 years before she passed on she was really strong never complained about anything even tho her body failed her . It is so sad to see this . 😞

My mom had it too:(

AWESOME COMMENT! You are right, she is a QUEEN 👸🏻👸🏻

You’re a wonderful comment writer 💜

Well spoken! ❤️

Tyanna Langevin right

900th like (•0•)

Why?

@@yva5725 higher crime, and specifically theft rates.

@@Gingersnaps_the_pumpkin_kitty shocked!

Could be any city really, especially because of that chair. Those are expensive and someone could case them and break in to steal it. A home invasion would not be that hard with the two of them....I'm glad they have that many locks.

Adina Budacov you got a oF likes

Yes! you are right

She is beautiful

Michelle odonnell

Adina Budacov .....STOP LYING...THEIRS ABSOLUTELY NOTHING BEAUTIFUL ABOUT IT

Frank Torres that's what I said my problems that I have are nothing she's a Strong girl 😊

Frank Torres amen to that

Frank Torres I was just saying that , we complain about small stuff but someone is always going through something bigger !

Your problems are valid just different not lesser, as someone with a different but related condition please remember no matter what problems someone else might have yours count and are not diminished by comparison, so what if your problems are trivial say you don't like the way your nose looks but I can't feel my left leg and therefore can't walk properly, are they in any way connected? No and as such do not compete or become diminished by the others

Summer Rosales lucky if you run into her let her know we all here think she’s GORGEOUS!!!

Yeah, if you meet her somewhere, please tell her that I think she's really cool and beautiful! I know I'm just a random stranger on the internet, but this young lady is really inspirational, like the epitome of turning the lemons life gives you into lemonade.

Summer Rosales thinking the same thing!!

tell her we aLL THINK SHE IS ABSOLUTELY GORGEOUS

Same!

Melodie Shirazi my mother had scleroderma as well.

I have never heard of this until now. How does the skin hardening leave one in a wheelchair? Does it make you immobile? Sorry I'm just really curious.

the skin hardens both on the inside and outside so it stiffens your internal organs basically. this is also known as fibrosis. so it creates lung and heart fibrosis that create shortness of breath etc. your internal and external being hardens to a point where you are trapped in a "shell" because your skin because so thick, leathery and tight that you cannot more your limbs properly without literally ripping your skin open

observe the tightness around her mouth, the skin around her face has tightened or hardened which means she cannot open her mouth properly, and most likely has difficultly eating, swallowing and drinking, and sometimes speaking. if you see, most scleroderma patients look the same. it is a very distinct looking disease

Melodie Shirazi I definitely do see the restaint more clearly now. That really does sound painful if you have to worry about simply moving. I wish the best for this lady and your mom!

Zuzanna Zajicova yeah

Rude

Why does this have almost 200 likes like rude

@@hipsterpotato2706 why is it rude? She discribed herself as goth. A goth thrown design for something she has to have with her is a good idea.

that would be dope 👍

StarlitSilver did you say hi? They are amazing people

Kry Kosmos I wanted to? Even started to approach as I was barely a few bodies away (they were in a sort of lifted area so she could see comfortably). But didn’t want to invade, you know? Not everyone wants to be greeted when they’re just out and out so I wanted to respect that, if that makes sense. I wish I had, though.

Next time say hi! :)

Rahul G what a horrible comment. You do know that Shirley Alvarez is "The Tragic Doll"?

Shirley Alvarez You're awesome!! Living with such a condition must be a pain. I love how you have overcome your problems and are truly embracing yourself!

Samantha K you think so?😅

Gabi Maza you do lol

Om I just thought u her sis

Gabi Maza yep, she’s lucky

loving the sister's hair

Shane Stephen That doesn't mean anything. I have friends who rock the goth style and wear stuff like that but they still go to church, pray and believe in God. Unless she said herself that she doesn't want anything to do with God your point isn't valid. And yes she is very confident don't say that she isn't.

jssangel416 Too bad society needs an affliction to have it.

Usually when you have something that makes you different and forces you to fight harder to get forward in life it gives you a certain strength and you have to be determined and you're kind to others because you know what it's like to not be treated with kindness because it's common to get bullied or teased or misunderstood when you're not like everyone else. People without any bigger problems take things for granted and have no real understanding of their privilege as they can get forward fairly easily without having to fight with every step they take... And well It's better to be strong and determined than bitter that's why so many with conditions etc. choose to be positive because that's how you get a good life regardless of your problems. The average person could learn from and should respect different people rather than push them down and I wish they would more often.

Josefine Bliss completely agree

Part of it is the early diagnosis, I think. I was 12 when I got a life-changing diagnosis. Within three years I was pretty much housebound. It messes with you when you’ve not been able to grow up fully and have that sense of who you are as a person without the illness. Like, I don’t know what it’s like to wake up and not hurt, to go to bed and feel pain as the last sensation. I don’t really remember it. Just going out and getting a burger because I feel like it that day has about ten problem aspects that could trip me up and prevent me from being able to do it on any given day. When you have to work around every single thing you want to do, you get really determined to do what you can still do, keep your box as large as possible, otherwise you just end up getting worse more quickly and stuck in a tiny box where just sitting in bed doing nothing is too much for you and you’re too weak to do anything else. You may end up there, yeah, but you have to fight for every inch of ground you have to give up. That changes a person fundamentally. I hope with more people being familiar with more syndromes and illnesses, we can get more real awareness out there (not just name recognition) and more funding. Especially for rarer stuff, it’s criminally low because it’s not as profitable to find cures and treatments.

Kerline Kay both sisters are heros

When confronted with a dependent who will need lifelong care at first you ask, Why me? Then you find it a privilege to be a carer. My second son needed special care from birth right until his death nineteen years later. You are right to an extent but when you love someone you love their disabilities as well.

@Maribel De Leon u cant judge someone like thiss!!!!! Especially two sis's relation

@Maribel De Leon I understand what you mean BUT *she has a camera man on her face WHILE dancing of course she doesn't have fun*

Maribel De Leon Hi Maribel, Thank you for the compliment but we enjoy sharing life together and I am happy with that. -Tiffany A.

I know Shirley personally & she LOVES Tim Burton

There is Edward sissorhands on the wall

800th like!!

Wavvy how is it rude

Tim Burton doesn't have a monopoly on dark styles. Also give credit where credit is due I.e Henry Selick.

yes i think the same!

ρ я є т т у|fєαяѕ follow them on IG: @tiffyalva @thetragicdoll !

ρ я є т т у|fєαяѕ God abandoned her.

Peter then she would be dead. Not hardly. Just be thankful for what you have.

arisenApocalypse O_O exactly..

Peter Nope.

Fabulously fitting discription!

Mike Johnson Was that Doyle or Jerry? Cause if so, he was looking a bit rough. It looked more like a cosplay/just Misfits type of hair Just looked it up, it's called the Devilock.

+Lucas Bruno didn't she meet both Jerry and Doyle?

Yes, there were pictures in the video.

I saw them play live a couple weeks ago

i opened up for doyle last year

Jess jms I’m curious, what about her do you find so strong? Is it because she gets up every day, puts on makeup and wears nice clothes? What exactly has she done to make her a role model, aside from being pretty and thinking positively? I’m not hating her at all; I think she’s a pretty young lady, but I didn’t see anything in the video that made her inspirational.

PinkMonkeyBird wow, reductive. i see plenty inspirational, considering plenty of people without autoimmune disorders have less motivation and confidence than her.

AkaiRingo ❤️💚

sorry to hear that, hope your mom gets better.. 💛

I'm sorry to hear that... My mom recently had a surgery to help with her acid reflux. I think they installed some sort of device that helps control the opening and closing of the esophageal sphincter. The surgery, plus her condition, caused her bowels to become impacted, and the impaction caused the death of some of her intestine, which had to be removed. Ended up having five additional surgeries after they installed the device in her esophagus and nearly died because I don't think her body handled having so many surgeries well over a such a short period of time.

Oh, gosh. It's been so long. I'm trying to remember.... I think she was diagnosed around 2002?

Usually HLA-B27+ autoimmunes come in three. I have Uveitis, Rheumatoid Arthritis and Amblyopic Keratopathy