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

[@giorgiacarlottarossato6399]

My grandma has this disease since she was 17, they told her she would've died at 35. She's now 79, sitting next to me, battled against cancer and still battling against scleroderma, happier than ever.

[@maurreese]

♥️👏👏👏

[@MamaKat92]

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.

[@emmamui8470]

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

[@editname8050]

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?💕✨

[@giorgiacarlottarossato6399]

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

[@Poroszka5]

gliding gracefully in a wheelchair while wearing a black fur trimmed cape is the goth queen we deserve

[@zombi3pony]

A true queen

[@breanajordan3760]

Yass

[@Mila-lz1ki]

iconic

[@Irma_GA]

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

[@sepniphanie3849]

Yes she is a Queen

[@bobbytate9907]

She's remarkable...something so tragic, but she just OWNS it...like a beautiful character from a Tim Burton movie.

[@shirleythetragicdoll8720]

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

[@nylawalters7]

Ur SOoO. nICE

[@AhmedArysh]

❤️

[@ToriC524]

omg it is like shes from a tim burton movie!

[@Hamburger8079]

Bobby Tate PREACH

[@markoembarko9045]

I also have this disease. It's admirable to see her strength, because it's such a terrible disease. Much love your way girl... We got this!

[@bornyesterday2994]

Ally Sha how did you get diagnosed

[@markoembarko9045]

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 ❤

[@bornyesterday2994]

Ally Sha how are u feeling?

[@markoembarko9045]

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?

[@aaliyahdouglass2166]

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

[@tanyalovesrain8528]

Her wheelchair should look like a throne with black roses and stuff, that would look amazing tbh

[@skoreos5614]

Embracing the inevitable

[@ihartchrome]

Ya that would look awesome

[@wadeguidry6675]

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.

[@Dream_Sings]

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

[@lalla1262]

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

[@alicia-lo6mt]

She actually looks really pretty and sassy roaming around in a wheelchair

[@mikarosey]

@@danielkerr4100 Nah u do though

[@sarahwhite2777]

@@danielkerr4100 Damn look at u lmao

[@Tigerheiress]

sassy? 😂

[@moistslippers9726]

The makeup looks pretty*

[@hasnapiekne8144]

Oh come on

[@ytienne1604]

She is truly a *Goth Queen*

[@FabulousKilljoy]

Zei Zei LovesGaming that’s what I was thinking

[@colinf4009]

She definitely *is*

[@user-xc9di1ko4t]

I made it 2.1k

[@dagoterry]

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

[@celestialudenberg4598]

I approve of thee comment

[@parkjisungluvbot1475]

My mom has this condition! Hearing someone talk about scleroderma and bring awareness to it makes me happy.

[@tobyjohn4682]

Stan

[@ijustdidahugeshit]

@@tobyjohn4682 I am a qualified lesbian too

[@whatscookingwithbrendaheli481]

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

[@ijustdidahugeshit]

@@whatscookingwithbrendaheli481 I am planning to get pregnant 🤰

[@arunimarai5318]

May God bless you and ur mum ❤❤✨✨

[@abbywolffe4114]

I love the way she just owns it, sweeping around in her wheelchair like the Queen of Darkness herself

[@kelseybarker7208]

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

[@cemeterybackyards]

Her wheelchair should be decorated like a throne

[@blakestone3526]

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

[@fuckutube9217]

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

[@imdeadinside9069]

It is a throne, for the queen

[@cburrell3]

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

[@raindoset5408]

Nah she needs to walk.

[@Blazedbarbie333]

Her sister is so helpful and good to her. I love this girls attitude and determination. They are both beautiful

[@JennyJunko1]

She could definitely work in horror movies, and in not saying this is a negative way, shes beautifully unique

[@allyburnett3315]

I could see her on AHS for sure.

[@angiedonams1266]

Yaa true not in abad way.

[@TemkaUwU]

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

[@snigdhabiswas6764]

That's mean though you didn't mean to

[@xxo6813]

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

[@ebagentj]

My aunt sadly passed away from scleroderma a little over a decade ago. She deteriorated rapidly, with having issues breathing once it caused hardening in parts of her lungs. The doctors amputated both her legs in an effort to relieve the amount of oxygen needed for her body (they were already starting to lose function because they were starved for oxygen), but shortly thereafter she passed away. Ever since my entire family has been working hard for scleroderma charities, in order to raise awareness of this little known disease as well as earn money for the organizations looking for effective treatments and cures. Specifically, we work the most with the Scleroderma Foundation.

[@martas277]

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

[@ozgezafer]

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.

[@ebagentj]

@@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?

[@ladymopar2024]

So sad take care

[@penguinnn4life344]

EB Agent J sure lying for attention grow up

[@drcwellneascenter]

Seriously 1.2k dislikes??? What's there to dislike?? Her self confidence or positive attitude towards her life or her sister being a loving soul!!!

[@stephanienorth1911]

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?

[@danhalo1405]

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

[@paolazeledon8001]

@Mrs E Since when is gothic white culture?

[@jenniferda8318]

@amanda ^

[@noodle2269]

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.

[@cheesecake134]

I think it's really inspiring she just ran with the whole "goth doll" thing. Truly making lemonade out of lemons. I think she's really cool.

[@mewmewwhitetiger6010]

She can barely move and she still does her makeup better than me

[@cherylrose6022]

dances better than me too tbh 😂

[@wopwopwallchonkyarm3217]

lol same

[@marinad6228]

she is amazing

[@marinad6228]

iam normal and i cant be bothered doing maicup

[@kitty8527]

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

[@jess.0J]

Her mental strength alone is something to commend!

[@birdlover5]

Jess B Agreed! Very insiring woman.

[@thecircle8568]

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

[@Nick-cg5hi]

How to make Pizza at home dude

[@AmeRain]

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

[@blankcanvassyndrome1716]

She really should do alternative-modelling, I'm sure that many photographers would love do take pictures as her modeling. She rocks that style and she's beautiful

[@yoyohayli]

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.

[@michellesaxton2039]

they both looked like badasses walking down the street with the slow motion. oof I love this girl. she's so confident and gorgeous and independent. as much as she can be anyway.

[@johnpartlett3501]

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

[@michellesaxton2039]

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

[@hanwriter]

*"you know what? I'm gonna snap out of it."* I love that, so inspiring!

[@JoanieTiVi]

One of my friend had this disease and she died of pneumonia because her immune system was too low. The only thing that was visible was that she wasn't able to close her hands completely. She went away too soon but it would have break my hearth so see her become weaker and weaker. This woman is very strong.

[@beejay4025]

JoanieTiVi sorry for your loss!!

[@Fuzioctopi]

Crystal Chandelier don't be a vile person

[@ewurabenaofosu-aikins9498]

Brandy Coomer Yeah, me too

[@GeorgiaGeorgette]

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

[@ssimms8995]

Crystal Chandelier so will other people when it happens to you

[@snowbelle_]

That’s awesome that she decided to embrace herself rather than question why she has what she has. She seems to have a beautiful heart ❤️

[@leahetter5576]

Amazing! My mother suffered with scleroderma for 20 years, fingers amputated, her esophagus was closing up, lungs hardening, but she fought until the very last day. Please keep bringing attention!! 99% of people I talk to have no clue what scleroderma is, even some nurses have questioned me when I bring it up. Thank your for your strength and bringing your beautiful face this awful illness. Thank you a million times over. And keep it up, stay strong girl!!!

[@jessicaledue3098]

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.

[@TheSoloson]

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...

[@greenkoolaidguyplays1945]

I've never heard of this thanks for telling me

[@shannineashford5735]

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 . 😞

[@donnamarcellus8470]

My mom had it too:(

[@shatteredenigma7148]

Honestly she is amazing. I've talked with her. She is one of the sweetest people ever. She truly is a queen. :)

[@briaxnaa]

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

[@xThePrinceOfPeace]

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

[@justsomegirlwithoutamousta3173]

@@briaxnaa wow

[@viraljunk34]

She my mom

[@iloilee]

Systemic scleroderma is one of the most painful, debilitating conditions out there. A lot of sufferers don’t last more than 10 years after diagnosis. I had a scare when I was 16 or 17. I had a lot of the symptoms and abnormal blood results. My doctor referred me to a rheumatologist and everyone was telling me that there’s a chance I could have it. I was terrified out of my mind for the entire month before the rheum appointment. But then I got examined and it turns out I don’t have it (thank god) but that scare taught me how short life is and that I need to appreciate each and every day. I’m so grateful for my health and my life. I hope one day a cure is found. This disease destroys lives.

[@emilydraper8971]

Delilah Phillips Glad everything turned out okay for you!

[@iloilee]

Emily Draper Thank you 💜

[@mindyschocolate]

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

[@alirose3846]

Delilah Phillips .....

[@hotmessexpressmama]

Well this is a bit of a backhanded comment.

[@aguilarriscool]

My aunt had scleroderma , she passed away at 35. I miss her, I took care of her every single day until the day she passed. Never in my life have I met someone so strong!

[@Aivyl-G]

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

[@littlemissgroove]

Richie Aguilar so sorry to hear x

[@sswanie5]

I am so sorry for ur loss

[@DanielPadro]

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

[@kristinel6352]

My mother passed away in 2013 from scleroderma.

[@amandawilkerson1338]

Love her style. She looks great. Handling it leagues better than I would.

[@moa6081]

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

[@amesch840]

My thoughts exactly..I feel selfish,.

[@timfly767]

She has sensational fashion sense which suits her perfectly. She's unique. She's stunning.

[@LilyIan]

Looove her style 😍❤️🖤 she’s totally living her best life.

[@jstarASMR3103]

Lily & Ian TRUEEEE

[@houda1168]

So true ! ! !

[@softstar5375]

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.

[@alex-he7sy]

Sameeee

[@aditi1998]

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

[@MichelleJ1822]

It breaks my heart when people with different disabilities or illnesses asked them selves "Why me?" Like they wondered what they did to deserve it. She's a beautiful young lady and one hell of a fighter! Keep up the good fight!

[@josefinebliss2801]

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.

[@SunflowerSpotlight]

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.

[@puppy3908]

"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

[@tyannalangevin4030]

Girl that's not a chair it's a throne cause you are a QUEEN! Get my Tragic Queen of Dolls, get it! Also I love that you still dance and your modeling is unreal! Please don't ever stop. You're hella inspiring and you're genuinely brilliant at what you do. You're freaking incredible.

[@Mmmkay10]

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

[@hollibee78]

You’re a wonderful comment writer 💜

[@amandanoelle101]

Well spoken! ❤️

[@daijhamccollum]

Tyanna Langevin right

[@crystaleunoia3974]

900th like (•0•)

[@shivalishankersharma1562]

Both sisters are really pretty. As sad as this is, I admire her strength and positive thinking.

[@StarlitSilver]

I saw her and her sister at a Years & Years concert this past Sunday. They were both smiley, carefree and seemed so kind. Truly awe-inspiring

[@KryKosmosXoXo]

StarlitSilver did you say hi? They are amazing people

[@StarlitSilver]

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.

[@shirleyalvarez3817]

Next time say hi! :)

[@mysteryelysian]

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

[@vaishrox66]

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!

[@user-pt1cz4ot1e]

She and her sister are ridiculously beautiful. Goth does suit her too. Good for her, living life to the fullest. She should, and probably does, help motivate others to do the same.

[@whitehorse8558]

She is honestly so pretty and kind.

[@whitehorse8558]

Truth well in my opinion,

[@nicklasveva]

Pretty? No. Kind? Maybe.

[@JeSuisMelBell]

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!

[@Chris.B1111]

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.

[@countrygirlxo7188]

I love the bond between these sisters, a bond like this between siblings is extremely rare. 💕 your strength is motivating

[@shirleyappel9162]

I admire her strength and confidence. She has more spirit in her then many able-bodied people. God bless you!

[@fjordm6989]

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.

[@pastagirl96]

my mum has systemic scleroderma. thank you for shining light on illnesses like this and creating awareness.

[@jessicaledue3098]

Melodie Shirazi my mother had scleroderma as well.

[@redwalrus2730]

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.

[@pastagirl96]

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

[@pastagirl96]

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

[@redwalrus2730]

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!

[@myozbubble]

My former roommate was experiencing stiffness in her hand joints. It got bad and I worried she had Lupus. She got diagnosed with scleraderma. Then I wished it was just Lupus. I moved out of state and lost contact with her. Last I heard she had a job but she had no one to care for her. I tried to locate her because I was willing to get her and take care of her.

[@lorimiller4301]

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.

[@sunshineandc0nfetti]

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. 💙

[@LordofFullmetal]

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

[@PomPomTimy]

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!

[@kevinbacon5492]

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

[@heidisegovia3452]

Her sister is so sweet for being so close to her, and they are both so beautiful

[@franktorres7963]

You’re an amazing soul. My problems are nothing. I hope the best for you because you deserve the best.

[@vivianb5325]

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

[@coredadventure1]

Frank Torres amen to that

[@Chatgptreads]

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

[@rach_laze]

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

[@jssangel416]

I worked with someone with this condition (not as advanced as Shirley's) and she was one of the nicest, strongest, most determined people I'd ever met. It's like this affliction and diseases make people find an inner strength that the average person doesn't exhibit.

[@WarpPal]

jssangel416 Too bad society needs an affliction to have it.

[@josefinebliss2801]

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.

[@spicyfries4260]

Josefine Bliss completely agree

[@SunflowerSpotlight]

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.

[@reciestrange4856]

her & her Aesthetic are both beautiful! what a strong girl🖤

[@SpiderMonkeyy35]

This was hard to watch. My mother passed away from Scleroderma. And with mothers day coming up it makes it especially hard. But I wanted to wish everyone out there a happy mothers day. Keep fighting on!

[@gad9230]

*Perfect example of making the best out of your situation, so much positivity in her heart good job snapping out of self pity and mentality true motivation*

[@i143icecreams]

Both ( Her and her sister) are both amazing and beautiful, But I really gotta give her the credit for not letting negative things affect her and her life. She has a strong mentality and is living her life to the fullest. That alone is not what everyone can do or conquer so Mad Respect ! Thanks for Sharing.

[@skimm1lks]

I love her victorian style. Its so cool looking and the decor in her house is really nice

[@Blaizikins]

Her sister is so lovely and supportive, I hope they are both leading happy lives together now.

[@elysabethpoodle6234]

Wow she is able to make her weakness a strength and embrace it as part of her persona. "The tragic doll" She suits the look and has an artistic attractiveness that I would love to photograph.

[@k.6072]

Your sister is a hero. What an awesome sis.

[@hannibalhendrix3523]

Kerline Kay both sisters are heros

[@millertas]

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.

[@bhaskarsachdeva1720]

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

[@markantonych1795]

@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*

[@tiffanyalvarez9804]

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

[@LovelyNatalie-814]

Watching these types of videos make me realize I have a lot to be greatful for.

[@sidequestsammy411]

So elegant inside and out 😻 A black rose, standing tall and firm within a garden of red roses.

[@emadams6827]

Fabulously fitting discription!

[@moonlightjasmin]

Ok but she's *so* beautiful

[@riaswrld.]

Truth don’t be rude

[@vladapetrovic1644]

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

[@suntheflower4281]

II Killmonger II the truth is hard to take

[@simranelahi5172]

J a s m i n i did ur 501 like

[@emmapogosian5043]

Sun the Flower no it was a channels name

[@adinabudacov9669]

Beautiful fighter...

[@esmeekanters9365]

Adina Budacov you got a oF likes

[@elysium1141]

Yes! you are right

[@emilywells5461]

She is beautiful

[@MO-fr1wx]

Michelle odonnell

[@hippykiller75]

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

[@renatavzq]

I love how all of us just accepted her as a Queen and want the wheelchair to look like a throne. You rock Shirley!! 🤘🤘🤘🤘

[@gabimaza780]

I’m so glad she has her sister

[@gabimaza780]

Samantha K you think so?😅

[@chl_o.e_r]

Gabi Maza you do lol

[@dontknowhowtonameaname7493]

Om I just thought u her sis

[@Mario-xh1lq]

Gabi Maza yep, she’s lucky

[@Corgigirl901]

loving the sister's hair

[@melc_91]

She chose to be happy. What a beautiful spirit

[@TattedMunchkin69]

Her and her sis are so pretty. God bless them both♥

[@KryKosmosXoXo]

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

[@SnapTrack111]

ρ я є т т у|fєαяѕ God abandoned her.

[@pltbw2195]

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

[@pltbw2195]

arisenApocalypse O_O exactly..

[@flamestoney5651]

Peter Nope.

[@garyallen1473]

Her confidence is so inspiring, finding what she needed in goth, fashion and music while embracing her limitations. How could anyone not like her. She is attractive and cool as hell.

[@alldopethings]

I was diagnosed with scleroderma 2 years ago. Thank you for sharing your story. Beautiful soul!

[@trystofficial5446]

I know Shirley personally. She is one of the strongest people I have ever known. Goes to every show and event. Always in first row with all the action. We have shared amazing times together and I am so happy to have met her. She is an inspiration.

[@jessjms1181]

People with the same condition would find strength in watching her. Kids can watch her and see this is the way it’s meant to be. She’s amazing because she thinks positively like this all on her own. This is what you call strong, this is the exposure of disability children should be getting.

[@pinkmonkeybird2644]

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.

[@quirkypurple3]

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

[@TrudyPatootie]

Both absolutely amazing. That sisterly bond is something that can never be replace. She is clearly a Goth Queen... Her sister is my hero... I know she wouldn't accept that title, but I am giving it to her anyway. Shirley...you are my hero too. Love and kindness to both of you.

[@exclamation.]

Her mental strength is incredible. A wonderful woman that makes people and herself happy.

[@Djk2578]

I found this so inspiring, I was recently dealing with a serve eczema outbreak all over my face arms and back and watching this put what I have in perspective. Change your mentality... thank you dear, you’re awesome and I love your style!

[@rosesforray]

me too i get flare ups of i think eczema it runs in the family but i get patches of rough itchy white spots and it can stay on the target spot or spread all over my body its so painful and i live on a resevation with contaminted water so every shower makes it irritated seeing her makes me feel a little stronger though theres days i wont leave the house and shes out here living

[@ariannah4256]

How could anyone dislike this? This is amazing body awareness and positivity! Your beautiful in every way you cannot let life tear you down

[@Sky-bu1jj]

people liked it so much that they turned their phones upside down and liked it again

[@cdtdark1581]

Maybe people just did it bc they hated the disease

[@serii1588]

Fortnite Gameplay yeah maybe they were sad that she was suffering.

[@johnpalermo2422]

Arianna Hawk BECAUSE people dislike themselves. So to make themselves feel better they try to tear someone else down. It's very much sad/pathetic.

[@deliciousdelightsbydenise4672]

Arianna Hawk It was probably KZbin robots and stuff

[@cmrjc74]

Her courage is a testament to humanity !!! I can’t contemplate living in her condition.... for what it’s worth I wish you the best!!!!

[@morganlemons1694]

She seems like a nice person

[@lonepotato1444]

It's rare to see you without much likes, I'll give you one then

[@sc-fx7cy]

1 month and only 6 likes? Damn. Well, now I'm the 7th :3

[@alleytheawkward309]

I see you everywhere

[@smallfries4318]

a

[@rushaliverma4196]

Yah true and her sister too!

[@elinerebekkaherheim1174]

This girl is amazing and beautiful! She really inspires me to become more positive and appreciate what I have in my life.

[@nuggwife7162]

This girls a true inspiration, who radiates beauty from within. She gives me strength & i think she’d be an amazing inspirational speaker for young girls. I’m so glad she has such a close relationship with her sister. The Tragic Doll has gained a new fan! ❤️

[@magickitchen54]

What an inspiration! I have scleroderma too and I reached that point where I got tired of IT defining who I was. I love how you basically went with it and created your own self. I know how tired you feel with the disease.

[@jamjamb123]

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

[@nemisiscat]

It's a really terrible disease. My mother also has scleroderma, but she has the other form, which attacks the organs. My mother takes so many medications to deal with the effects of her organs hardening. I think one of the worst problems she's had, so far, is acid reflux so bad that it causes esophageal ulcers, as the esophageal sphincter doesn't close correctly due to the hardening tissue. Her kidneys have been suffering lately, as well. Sometimes, this autoimmune disease acts aggressively and the sufferer passes away quickly. My mother, fortunately, isn't one of those people. She was diagnosed over a decade ago, when this disease was fairly unknown. It's good to see some publicity for it, because the more people who know about it and the more attention scleroderma receives, the higher the likelihood that more funds will be put into research and that will hopefully mean better treatments for all sufferers. I'm happy to see that Shirley is staying positive and not letting scleroderma get her down. Unfortunately, my mother doesn't have the same mental fortitude and the limitations it placed on her, as well as the pain it causes her, has made her very depressed. Just a note: I've been told auto-immune diseases come in threes. This may or may not be true. In addition to scleroderma, mother has rheumatoid arthritis and cryglobulinemia (basically, her blood starts to thicken when she gets cold).

[@youiloves1242]

AkaiRingo ❤️💚

[@faridahkamil87]

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

[@nemisiscat]

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.

[@nemisiscat]

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

[@chewsingh2745]

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

[@LilaHart]

Wow this was really beautiful, thank you so much for making this video, I love the bond between these two sisters. Absolutely beautiful ❤️ “pain builds your character & strength”

[@jyotikohli5792]

Lila Hart

[@nostalgicfanatic]

Lila Hart really lady? I find extremely disturbing.

[@LilaHart]

xXDarth TragedyXx yes, it’s inspiring that she is so confident in who she is, beauty comes from within, and her light of beauty shines brightly. I admire her story and bravery.

[@holliefarokhi6218]

Beautiful woman who turned her disability into triumph 🌺

[@stephaniedaigle5930]

hollie farokhi Beautifuly said!!!

[@f.u.c8308]

She is living with it every day

[@nancybeveridgetaylor3256]

She is a work of art in every way.

[@karladuncan4026]

I agree totally! Love her!

[@mikejohnson6369]

She met the Misfits...right on!

[@lucasbrucas9632]

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.

[@ispendtoomuchtimeonthisweb3296]

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

[@ylvali5333]

Yes, there were pictures in the video.

[@amydunne8674]

I saw them play live a couple weeks ago

[@lizzykeune6842]

i opened up for doyle last year

[@sweets2thesweetshop]

Love the goth Tim Burton look. 🕷♥

[@powerchairchick]

I know Shirley personally & she LOVES Tim Burton

[@lisazhong6139]

There is Edward sissorhands on the wall

[@nonetheyoshi9093]

800th like!!

[@OatsTheOcelot]

Wavvy how is it rude

[@mslita09]

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

[@miale3593]

I love your energy and attitude! Way to go girl! My grandmother had the same condition and she was a strong fighter too. She was already in her 30s when she was diagnosed with this condition. She fought her whole life with it, along with my caring loving and supportive grandpa. It was never easy for her, especially when health care condition was not as good way back in 1970s in China. Looking back now when I’m also in my 30s, I realized they are both role models for me the whole time. The strength my grandma had and the respect she held to her life is so powerful. I’m so grateful to have them as my family and I miss them a lot ❤️ Wish you all the best and life will be as beautiful as you wanted it to be :)

[@ryu7408]

Expressing oneself is the path that leads to liberation. Impressive woman.

[@LaDrenaSoCali]

You and your sister are beautiful don't let anyone steal your joy you are a great example of resiliency keep up the good work

[@zuzahill1182]

You should get a wheelchair that looks like a goth throne lol.

[@hannasturgell3976]

Rude

[@hipsterpotato2706]

Why does this have almost 200 likes like rude

[@samikay9599]

@@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.

[@LapisAzula]

that would be dope 👍

[@Solololol]

why are people calling this rude?? It's a great idea, i imagine she would like it.

[@crowthyr5884]

She is the goth queen we deserve

[@RachelLovesBrazil]

It is so cool to see how she embraces who and how she is, and she is beautiful! What an inspiration! Also I love the sister bond - how precious!

[@frith.calluna]

I love how even in a video about her condition, you can tell that it doesn't define her because she chooses to be so strong and she has such a bubbly personality! That's something we could all learn from

[@Tinybeequeen]

She’s got an amaaaazing sense of style That’s gotta be a difficult condition to live with but it’s fantastic she’s still able to express herself creatively That would be my number one fear as an artist, the inability to draw, but she’s killing it. I love this. And these sisters are so loving.

[@Secret-sw8ih]

It amazes me how strong people can be. How strong you are..is incredible. You go girl! And by the way clearly you are very beautiful indeed. Gorgeous figure, hair eyes etc. I wish you all the best in life x

[@leiasclaws1373]

I have so much respect for her having to have this life...she is so strong and truly beautiful ❤❤❤❤❤🙏

[@susanfagan2727]

If we could bottle up a 1/10 of this lady's spirit we wouldn't have many problems !

[@FatKouchee]

Why am i crying 😔 you just don’t know your confidence man it’s amazing here i am tryna build my confidence back up and love myself have suicidal thoughts because of it . Here you are battling a disease but your confidence is out the world you don’t care i love that 😩😩 i really do . One day I’ll be able to be confident like you

[@ilayahyahawahshai7025]

What you need is YAHAWAH THE KING OF HEAVEN HE TAKES AWAY BAD THOUGHTS, heal souls and bring joy in life . Sorry if I get involve in this , but I just wanna help people around the world ... they don't know who is the real YAHAWAH HE IS THE CREATOR OF ALL THINGS .

[@Iv1309]

Don't say one day. Say today! Because when will that one day come if it isn't today? Today is the day you have. Tomorrow isn't a guarantee. So make the best of it. Be confident today. Accept yourself today. And most of all, accept God today. Not tomorrow. Because all we have in this life is now. But with God's grace we will have eternity. This life will test us. But in the kingdom of God there won't be any more pain or sadness. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away. Revelation 21:4 I will pray that you will become a living testimony. And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. Romans 5:3-5 may God bless you today. Not tomorrow, today!

[@Iv1309]

ILAYAH YAHAWAHSHAI amen. Although I have never seen his name written like this. I have seen Yehowah, Jehovah and Jahweh but never Yahawah. Anyway, it's all based on the same name found in the Hebrew scripts. They don't have vowels so if we transcribe it's written JHWH. And it can be pronounced in different ways. The Jews call Him Jahweh. But in the western tongue he's mostly called Jehovah. All the pronunciations are based on the same four letters JHWH. Although I think that the Jews are closer to the real pronunciation. Because His name was given in their language first, which is Hebrew.

[@auralavish8335]

Truly Ariyon hey, you were probably looking for some good advice and yeah sure religion is a good thing to follow, but I definitely can give you some advice of my own dealing with a similar situation. As cheesy as it may sound, you are the only you. There is no one else like you. Don’t feel discouraged to see others less fortunate and fighting for self confidence. It doesn’t make you any less because under all that you are you, defined by who you are and what you do, rather than how you look. Even though it may sound like nothing, simply giving yourself a compliment from time to time will help you out. Try this, anytime you find yourself belittling yourself, instead replace it with a compliment. Because at the end of the day it takes a ton of strength to realize how you feel and be honest and come to terms with it, and overcome suicidal thoughts. So thank you, for being an inspiration buddy 💗💖

[@FatKouchee]

aura lavish i really wasn’t looking for advice but I’m glad you made this comment because it’s really not easy and i hate when people tell me it is . Like i recently lost my job now me and my mom been without water for a whole month and we are about to get put out if i can’t come up with $416 for the rent . It’s hurting me i can’t even show my mom it hurts i made this promise to my dad two days before he died I’d take care of her even though he wasn’t able to talk anymore or move because of the cancer . All he really did was look but i knew if he could talk he would have told me thank you . I broke my promise it’s hard to get a new job because i don’t have the experience i really hate this because all this just adds to how i feel about myself like now I’m feeling like i don’t deserve a job I’m igly that’s why nobody wants to hire me I’ve asked friends for help but nobody truly got me part of me feels like GOD hates me . It’s like i know you hear me crying for help i know you do why aren’t you answering my prayers did i do something to make you hate me i really appreciate your comment more than you know

[@cassieisarmageddon]

One of my sorority sisters had this disease. She was one of the most beautiful people I have ever met. She was always happy and always so sweet and kind to others. Her heart was bigger than the world. I am so blessed to have met her. She passed that same year. I didn’t know her long but she made the biggest impact on my life. I think about her still until this day.

[@asmatasmeen9244]

Nobody: The cat at 0:27 : avoiding the eye contact like it has done something fishy

[@raindoset5408]

when the imposter is sus 😱😱😱😱😱😱😱📛📛📛📛📛

[@Pandurra]

@@raindoset5408 😱🙀😱🙀😱

[@earlgreydionne1489]

I also have LcSSc aka Scleroderma. Wow the disease is being acknowledged. I guess a lot of us live day to day. My thickened skin is currently bad on legs and hands. I use a wheelchair for anywhere far. You go girl, be the warrior we have to be xx oh and keep warm ;)

[@cassiej9460]

Dee F I’ve been recently diagnosed in 2018 and living life!!! Bless us all that suffer from this disease❤️❤️❤️🙏🏾

[@Keekonuts]

I like this gal...strong.

[@Keekonuts]

Shane Stephen I am actually responding to your comment because I truly, truly do not understand your POV. In fact, I am interested. Let me know why you say this. It is better than saying something a tad nasty. I am a social worker.

[@GoodestKitty]

Keeko I want to hear it too, she found empowerment in what others would see as a curse, burden, etc. in her predicament. There’s people that break apart from far small issues. She’s clearly not hurting anyone and is seeming to have a positive effect on the people around her. What’s perverted about that?

[@sainttom6785]

+Keeko Trump is a lion and you are just a weak canadian. He will do a second term and we will videotape your tears.

[@bigfella2111]

Keeko was it a pun am very confusion

[@naturesfinest4871]

Saint Tom unless someone kills Trump

[@OhhSlash]

nothing but respect for this woman. Shes a real fighter and it makes me so happy to see her making the best of her situation

[@andromeda8325]

Damn! She's a scholar! It's amazing how strong a person is in the difficulty they have... and how much stronger they become as a result, and those people truly are mentors and teachers to the rest of humanity. I think her sister isn't the only one greatful for someone like her in this world..... I am too♡

[@sumaiyaabdi8610]

Sibling relationship Goals right there.

[@VySharieff]

Wow! You’re an amazing warrior, you go girl💜

[@samiammunoz6854]

i have scleroderma but i was diagnosed with linear Scleoderma which is the same thing but only on spots on my skin instead of throughout my body i was recently tested for systemic scleroderma but i haven’t gotten the test results back yet out off all the medical documentary’s i’ve seen this is the first one i’ve seen with a person who actually has it and it speaking about it this is honestly the first time i’ve see someone else with the disease

[@maryrios3296]

Same.

[@stalatte]

i wish you the best with your life ❤️

[@emilycarolina97]

i wish you the best, my mom has it too and it mostly affects her internal organs but she presents with CREST. i was very surprised but grateful to see this video, the only other people i've seen with scleroderma were at a walk for the cure.

[@xxmeowkimeowmeowmeowmeowme1992]

Samiam munoz have you gotten the results yet?

[@kari7403]

Best of luck to you! I wish you all the best!

[@Ashleyandsammie]

I love how she is so positive. And her sister is an amazing woman too.

[@myproduction5262]

THAT SISTER THO!!!!!!!!!!!!

[@Goonxie]

DID YALL SEE HER DANCE

[@conephompany]

I prefer the goth girl

[@annamarie5994]

@@mikkmarken she's not a thot, be nice or gtfo

[@annamarie5994]

@@conephompany doesn't matter you can't get either anyway

[@conephompany]

@@annamarie5994 why not