“I am Burning Alive”: Girl Suffers From Rare Skin Condition

[@marilynedwards9938]

I’m so disgusted with our healthcare system. This poor woman has to live her life in pain because the one possibility of a cure or at the least some comfort is $60k. Unreal

[@brookecross5077]

Marilyn Edwards :( Me Too I Agree

[@CheapJack]

Well, you dont know what happens in Russian hospitals. Youre Lucky to have such a good conditions

[@marilynedwards9938]

Торгаш I don’t think you know anything about me or my condition?

[@CheapJack]

@@marilynedwards9938 i Just compare two sistems. And i know what im talking about. Of course if you live in India, or Africa its a sin to complain. Health care sistem is not so good. But i saw european and American hospitals. The conditions there are really great

[@yuvalkaye6598]

I have the same condition.

[@ot9835]

she seems really sweet i wanna give her a hug:'(

[@rebecca0liverx]

and her father :(

[@nikego412]

Me too

[@jessgunner5999]

Me too 💙

[@marashaf]

My name is Samara I thought I was the only one!

[@FazeNot]

Thank yous. I love hugs. Hugs are helpful.

[@wambuiwachira2345]

Can we just stop and give credit to the mom? I mean, she works so hard to support her family and does her best to take care of both her husband and her daughter whenever she comes home to them. That's pure gold! ❤

[@faceshredder2576]

Wambui Wachira I’m sure the husband and daughter are on some type of social security disability program. But yes, lots of love a courage from the mother! What a good woman

[@lindsayosterhoff2459]

@@faceshredder2576 Even if they are it wouldn't make much difference. Disability doesn't cover much and those who rely on it alone live in poverty.

[@lindsayosterhoff2459]

A someone who has health issues that make me mainly stuck in my house and in need of help in several ways, I wish I could hug that mom. She's amazing.

[@faceshredder2576]

Lindsay Osterhoff it may not make a difference to you but to the family it makes a world of a difference. The mum works and supports the family but the government supports them also. If you think the mum could solely support this family alone while paying for medical support you’re crazy. Lol there’s government programs out there for people like this girl and her father because their medical condition would cost them a fortune alone even if the mother has insurance through her own work.

[@lindsayosterhoff2459]

@@faceshredder2576 As a disabled person I am quite aware of the amount of money given to people who receive benefits. It is not much at all. The fact that you seem to think that it is shows you've never done much research into it. There are government programs. That part is true. However, those who depend on it live in poverty.

[@arachnohumanoidpolymultiverse]

What’s the point of having a cure if it can’t be afforded

[@antixpinballx125]

Facts

[@linahung3369]

Best comment 👆🏻👆🏻👆🏻⭐️⭐️⭐️⭐️⭐️

[@rose1742]

As medical technology improves over the years, cutting edge treatments will become more accessible and affordable. It will take years, but it will trickle down.

[@ycnno]

@@rose1742 is that supposed to be reassuring? awesome, just a few more years of agony for these people

[@IKEAsharkBBL]

@Didi you spitin straight fax 😭

[@abigaildevera41]

after watching this, I am thankful for what I have now...

[@skwaaaaa]

+Oblivious Gamer you're oblivious to the world around you

[@XxADJMTZxX]

you got aids

[@abigaildevera41]

+Le Andy rude

[@gracefergie1129]

Yeah I have renaulds and in the summer my toes and hands are always freezing. I'm so glad I don't have that other thing

[@skwaaaaa]

Oblivious Gamer you're name is oblivious :)

[@Laurz23x]

love her style! thats the exact meaning of "expressing yourself"

[@slehcyo8223]

I think she's herself completly as she spends allot of time alone

[@superultra2608]

Yeah!! |-/

[@enchantingelly4491]

Lauren Cønnølly yeah

[@mekx6592]

Lauren Cønnølly i

[@sowhat1444]

she looks like she spends a lot of time on tumblr

[@screamingtima1318]

I wish I had 60 thousand dollars to give to her.

[@Lingard-p8w]

Screaming Tima me too

[@aayannam]

Screaming Tima me to

[@siljedahle7741]

Screaming Tima donate her some silly hats!

[@byrnadettejohnson1866]

same here

[@lelychan8883]

Same

[@readmydescifyouwant650]

Her hands constantly shake it you look close when she holds them up. Poor sweetie. I hope we can help her.

[@ancaa.8514]

It's from the pain and the nerve damage 😔😭

[@mariechandler4004]

That would be so painful and hard to constantly live with that.. My best wishes to her.

[@lia-tu2kq]

it would be..i wish i could give her that 60k dollars. i wouldn't spend it on anything else. 💔

[@yeonbeom]

Army everywhere!!

[@shineinstars]

i wish i could donate 100k to her..

[@breakfastmochi]

She’s so cheerful and positive even though she’s in such a condition, it hurts to see her like this 😭 I wish I could help her

[@AgentDerevko]

On a positive note her art and fashion are beautiful

[@jessicat4371]

agreed!😊

[@FazeNot]

+Pokemontas Thank you

[@theedexter1996]

Hell yea it is!

[@crazychrizful]

+Rosie Posie I really like your style !! :)

[@nadiahenry2324]

.ikr its really cool I feel bad tho

[@spankler2653]

Watching these medical videos makes me very grateful for the normal body I have.

[@larrygerten9452]

True

[@audrirooks5962]

Me to

[@alinaarachnaphobic]

"Normal"

[@pureequestrian5700]

Same. Thank you, God. Or whatever/whoever created this incredible universe.

[@DoggoWillink]

Pure Equestrian God? I haven’t found him in any of these videos, so that’s an odd thought to me. Thank God I’m ok, but not these other people?

[@HunterElvis11]

She looks like a beautiful and delicate forest fairy🧚🏻‍♀️

[@strawberrymilkdducky.mp3.426]

Ikr?!? :D

[@FazeNot]

awwwww thank you, love that 🧚

[@thatdawg2021]

i touched the stove when i was little i cried like a bitch for that. can't imagine what shes feeling

[@stopitgetsomehelp.]

Yea and i burned a small patch of skin with sulphuric acid.İ can't imagine the pain it must be causing her...

[@memedreams8558]

random stuff I put both of my hands on a red hot stove top when I was three and got second degree burns and it hurt like a bitch

[@ausintune9014]

As a person who cooks alot, burns are common.

[@indigoberrypie]

I got a little burn on the back of my hand after cooking ramen noodles one time when I was like, 9. It burned like hell. I imagine it's like that but all over your body.

[@timberwolf5883]

She has a great personality and is a nice person She does not deserve this

[@Corgigirl901]

Finally someone who gives other compliments than "omg she's beautiful". I personally don't find her attractive, but I respect how strong she is and she seems very nice. :)

[@whatisthepoint5568]

Jacob Spencer Gaming what personality ?

[@harrypotter7159]

I agree with you

[@rainglow4481]

Nobody deserves this.

[@plecavalier836]

Jacob Spencer Gaming its true

[@KirstenMongie]

“It really, really helps when you’re sick if you’re rich.” That hit hard.

[@sunrisesunset7]

Welp she's is the best country to get rich

[@apples874]

Stem cell treatment is expensive no matter where you live

[@thatgoofygal]

She is so pretty but it pains me to see her sad 😢

[@usernamed8]

Same :(

[@Min-xh8ho]

Her hats are adorable

[@naydd9459]

An Cermet sexist...

[@ihavenonamehi813]

@@naydd9459 why?

[@naydd9459]

@@ihavenonamehi813 Don't assume anyone's sex.

[@talitajames7652]

She could sell them!

[@kittiekat7819]

An Cermet. Her clothes are very cute too! She's seems very creative.

[@jacksepticeye5832]

She's such a young, positive, sweet, and loving woman. It's such a shame for her to experience such a horrendous thing at a young age :(. I hope they find a cure and may god help her :(

[@spitz5183]

Jack Septiceye If god is all-powerful, he would have easily gotten rid of it by now. Then again, why did he give it to her in the first place? If he’s all-powerful, but chooses not to, then he’s an immoral thug who knows nothing about humanity. If god can’t get rid of it because he’s not all-powerful, then why call him god?

[@natp3017]

Jack Septiceye God doesn't help cure things fast. He has a plan for her and he just isn't ready yet.

[@natp3017]

I meant to say that to Secular Unity. Sorry

[@spitz5183]

Natalie Printup So his plan was to make her suffer first? “he just isn’t ready yet” Ready for what?

[@Skinnymarks]

Natalie Printup so you're saying that Jesus miracles where in deduct defiance of God?

[@wrapperhead6579]

She seems like such a nice person she doesn't deserve this

[@ZenTiXu]

Rice Head i agree

[@devina8812]

Thanks to the father.

[@whatsupfuckers4078]

Rice Head yeah :(

[@amairanihernandez2266]

Nobody deserve that

[@rocklee3022]

Poor girl! She is so pretty and so kind. It hurts seeing her in pain

[@LucyInNightmares1]

She's so adorable. I feel so sad that they have to go through this. It must be a living hell =[

[@helenarose8006]

I know right, I feel so bad for them

[@chelseajennings5969]

+LucyInNightmares1 it would be so hard to have that misery all the time of not being able to be cooled down. That burning sensation is the worst!

[@chelseajennings5969]

+LucyInNightmares1 it would be so hard to have that misery all the time of not being able to be cooled down. That burning sensation is the worst!

[@SanctitySmellsGoodOnMe]

hell is much worse pray repent end near

[@FazeNot]

+Juiceinmycup 777 - I know hell. You do not know hell.

[@Noodlemonkey7]

I love her clothing style. It's a lot like mine in some ways. I wish she wasn't always in pain. I hope she will be okay someday.

[@melissarosa2276]

+Tyler Drent Really??????? ;-;

[@luckyluciano2395]

Izumi AMV's yep, all because she walked into a sauna thinking it was a pool shower, and she died.. (not lying)

[@melissarosa2276]

Omg..... i'm so sad right now T^T

[@melissarosa2276]

Thank You for the information

[@stylesofbeyond]

No, don't listen to those trolls. She still has a youtube channel, you can go check it out

[@fluffydragon3333]

She should start a kickstarter for the stem cell transplant to sre her, who knows people might pay that much money just so someone could be happy

[@emmavon4013]

Fluffy Dragon yea i agree

[@szymonskoczylas9977]

yes!

[@squidneythesquid2487]

Fluffy Dragon I think she is

[@gracecooper-parker7049]

HOW TO DONATE TO HELP SAMARA Send donations via paypal to: [e-mail] Here is her facebook page: ('About' section lists that paypal) facebook.com/hopeforburningrose/ Sending money directly to her mother's paypal ensures they receive 100% of your donations, unlike crowd funded websites that take a percentage :) Much love x

[@JoyGoodchild]

funnily enough thats a little bit how the basics of a health insurance would look like. if many pay a little a life can be saved. but hey health care is too commi for US... or something? what was the reason again health insurance is the devil?

[@sereneybeanie6733]

She seems like a really nice girl. She is so beautiful and it sucks for her to have that. I hope she gets better and they find a cure soon.❤️

[@beutifulworld402]

Omggggggg shes soooo beautiful❤️❤️ simple, delicate and innocent. I wish people could help their family.

[@s0ra264]

Ikr she is so beautiful i wish her good health and i hope they make a cure.

[@petparadise6071]

Beutiful World me too!

[@YangTheGoddess]

Beutiful World then you sir are a trap

[@JakobatHeart]

yeah she's HOT ;)

[@j0sie627]

Whiterun Guard omfggggg

[@thiccsunflower1731]

Her hair is absolutely stunning.

[@heypeeps-go9xu]

Yea I kinda wish I had it.

[@professormilkdickphd376]

Tf r u talking about lmao

[@insertriverdalememehere7015]

I agree, man I wish I had hair that.

[@gabriellefigueroa950]

It really does though no joke.

[@brandontaylor2943]

Well she looks beautiful

[@melisadoodoo6134]

She is so pretty and I love her style

[@lisapurple5108]

Dvaixh Xbaixba I was thinking the same! Love her style

[@kiasrh7299]

Weirdo Lilac Girl coming at you hi

[@delydoesgacha5064]

Same

[@Dualityformality]

What a beautiful family. I feel so horrible watching her cry in pain and feeling so helpless, I cried with her. No one should have to go through life like this, she’s so beautiful.

[@hopeelizabeth6916]

I love her silly hats ❤️🙌🏼

[@l9426]

Me too

[@estheramondi2454]

Nooooo maybe that's where she gets her motivation to keep going

[@estheramondi2454]

Hehe they are cute

[@yourmum1963]

Hope Elizabeth same they are so silly and cute

[@microwaveablechildren9281]

I have the monster hat she has!!!

[@kay71095]

Raynauds syndrome is the WORST. It is so scary going outside in the winter time. I got frostbite in 20 minutes on my toe when I was younger. I had to get it cut off. I live in Mass. so the drastic change in temperature and weather doesn’t help at all. I can’t even imagine having both these things, I feel so bad.

[@HKIHNDKNSI]

Wait what how old were you

[@kay71095]

high quality content I was 12 years old when I got frostbite. I’ve been in close encounters plenty of times after that, like last winter, but I know my precautions now. I can’t even clean snow off my car in one go. I have to take breaks

[@masakazuhiruko550]

I do work as a pharmacist and yeah raynauds is a very dangerous thing. Slight drop in temp and you'll begin to have frostbite which hurts

[@charlotteharing3247]

I live in mass too squad (and have raynauds)

[@rachelsnider5616]

I have both of the diseases and let me tell you it’s not easy to deal with

[@OnlyEmma]

such a beautiful girl, hope she gets help soon.

[@FazeNot]

thank you

[@negomires2745]

she ded

[@theinternettrashcan]

I have both of these conditions. I have it in my feet, hands, face and ears. I have never met anyone else who has it, it's so rare. Luckily my case is milder than this girl's, but it's still so frustrating. All the easy things people enjoy, i can't enjoy. Taking a nice hot shower, going to the beach on a summer day, going for a walk on a sunny day, wearing sweaters in the fall. It's so painful and annoying and it gets dismissed so often because it's so rare, not even my doctors know what to do with me

[@xanipoo]

I’m not sure if you would have access to this but have you tried Cannabis oil? It has helped me considerably with easing my pain caused from my Erythromelalgia.

[@theinternettrashcan]

@@xanipoo oh wow i will look into that

[@kikit9072]

I have it, too, in my feet and my face. It's mild compared to what she has. I might not complain about mine as much now. Although I live in Florida. Poor girl!

[@FazeNot]

sorry you suffer from them too. it is so frustrating. i gave up on doctors

[@multipurpose6984]

I hope that u will have a beautiful healthy and long life😊

[@ameliahawkins0340]

I wish i could donate.

[@suetrue1]

Same

[@lilyfrie5352]

Same . Nice profile pic by the way

[@ameliahawkins0340]

Lily Frie Marina 😍

[@lilyfrie5352]

+ameliaaa lol I know right she's my queen

[@ameliahawkins0340]

Lily Frie yess

[@Beautyjoy98]

I suffered 3rd degree burns to 35-40% of my body at 22. An I'm disabled to due a brain malformation that causes massive chronic headaches and migraines and on top of all the I have very weak immune system. In fact I've been sick with the same cold for over 8 weeks now. But with those burns I can only imagine how she feels all the time. It was agonizing and unbearable at times. I was losing my mind. I feel so bad for her. She will be in my prayers for life.

[@rougetrooperz8663]

Like wheelchair disabled or mentally disabled? Anyway I salut you dude/ (i don't know what a girl dude is called)

[@Arscne]

+Rouge TrooperZ8 dudette ;')

[@fizzzycat6324]

Chiari Malformation?

[@ryankane8247]

It doesn't matter you look so pretty

[@FazeNot]

It does matter. The pain matters. It's not about looking pretty.

[@mamatha229]

May god bless her and her dad

[@FedeSkillArg]

Yes, he blessed them a lot, it shows... Stupid religious people...

[@Letsgetsubscriberswithou-ui9yd]

FedeSkillArg Really? 😐 Gosh you do not need to be that mean 😐. Yeah.. 😒

[@zeynabuthman639]

Oh yeah, we can see just how much God loves her and her dad. 😂😂

[@easilyamused713]

FedeSkillArg yeah I think "god" has done enough for them....

[@clarissepacino6331]

I can't look in her Eyes, it hurts, it really saddens me, Im hoping she can smile ,that reaches her eyes someday, I'm praying for that.

[@laylaa7315]

This is absolute misery. We should really appreciate what we have because we can't imagine what it would be like to live like this.

[@OfficialCynical]

Yep, so true

[@TheRitaish]

+Leana Eds Please I suffered I still do sometimes from the same , and I learned how to control it, I just want to help, HELP me get noticed so I can help her

[@laylaa7315]

+TheRitaish I think this condition needs to be broadcasted more so we can raise money and help people like you.

[@FazeNot]

+TheRitaish What helped you? It seems whenever someone with EM actually finds something that helps it'll only help that one person. But we all keep trying, whatever we can...

[@FazeNot]

+pop goestheweasel - I'm thinking no. That's not a safe alternative: "Although laboratory experiments suggest it is possible that some substances in Ayurveda might be developed into effective treatments, there is no evidence that any are effective as currently proffered.[11] Ayurveda medicine is considered pseudo scientific.[12] Other researchers consider it a protoscience, or trans-science system instead.[13][14] Close to 21% of Ayurveda U.S. and Indian-manufactured patent medicines sold through the Internet were found to contain toxic levels of heavy metals, specifically lead, mercury, and arsenic.[15] The public health implications of contaminated metals in India is unknown.[15]"

[@samreenrahman6804]

Omg this is so sad. She’s so beautiful. Her hair is gorgeous and her hats are adorable❤️❤️❤️

[@FazeNot]

thank you 💜

[@elpidakappa5555]

We need more people like you💜💜💜she's so inspiring :)

[@taxidoll3]

The mom is a superstar. Works to support them and then comes home and helps them as much as she can

[@maryrichardson9026]

This has got to be miserable. I pray that you will be healed in Jesus'name. Don't give up.

[@itsmeli0053]

Amen

[@sifaelnanono9077]

Amen

[@jtanrev1871]

Amen

[@midnightfox5684]

Amen

[@rosanna-sc4lx]

Amen

[@witheredhouseplant]

And I thought I had it bad with my severe eczema. She’s beautiful I hope she feels better..

[@cait6599]

Sparkling Garbage for real. I have seborrheic dermatitis and it feels like my scalp is on fire when I flare up but I couldn’t imagine having what she has. I really hope she gets some money to fight this.

[@moonstone4893]

Same. I thought my eczema was bad

[@kayhope2602]

Its not a competition. Someone will always have it worse than you. Youre allowed to have your own pity party.

[@emmanuelas8649]

same.I keep finding a new eczema spot every day and I get so angry

[@tastelesschicken4128]

Kay Hope I just feel bad for feeling bad for myself when other people have it so much worse

[@malkalevanna1071]

She looks like such a sweet person!!!

[@MeeYeeWeeWee]

That hair style and color is very flattering on her.

[@Kiriuu]

Monica W not a lot of people can pull it off but she definitely can

[@xoArmy20GirLxo]

I never knew such an awful condition existed, you poor thing I can't imagine feeling the way you do n suffering, you're a beautiful young woman with so much life ahead of you, I hope one day there will be a cure for you

[@emmaknao4948]

How can u smile when ur burning ? Like she so amazing, her beauty, im crying bc she's going through this and she's smiles ! ❤️

[@taniathorkelson413]

Nishika Amin she is such a beautiful kiddo!! My heart goes out to her as well!!

[@childrenofthesun471]

Crying srsly?

[@muzaferadizdaric5720]

Demonologist some people are sensitive 😉

[@childrenofthesun471]

Lєαh Thє Chєєtαh they are pathetic, in older days there where no such things

[@muzaferadizdaric5720]

Demonologist okay then i guess.

[@peach3857]

God bless her and her family .

[@开心ツ]

Kawaii Unicorn we meet again kawaii unicorn. I see you all the time!

[@eveyjay5647]

This is wierd I keep seeing you in video comments

[@koffinkat666]

She is in God's blind spot apparently eh?

[@joshuaportillo4880]

Why would God bless a family with a young women she cursed?

[@shiningstar3312]

Joshua ...God blesses us thru His Word.........He gives us principles of health........this young woman should try to incorporate the 8 principles of health into her life style instead of waiting for a cure.........which may never come.

[@mememey9889]

She had an amazing art talent...She is very strong..God bless her..

[@FazeNot]

thank you

[@mememey9889]

Rosie Posie You are welcome..pretty girl

[@reedahgong5]

Maya M Yeah she is and very beautiful if I was rich I'd get her cured then bring her and her parents to my hometown in Hawaii for vacation and teach her how to surf in the blazing sun and take her on a hike in our rain forests that start out hot but once your far in it turns cool from altitude and swim in some of the cold springs in the mountains.

[@mememey9889]

Reedah5Jamz Aww you are a sweet heart..proud of you😍😍 she deserve to be health..cause she is a nice pretty girl..and she had great talent and personality...God bless you and her

[@Miguel-fe1ny]

She lives in Michigan. That's even worse , I live here and the weather is scolding in the summer and freezing in the winter. This girl and her father is tough ✊

[@FazeNot]

yes both are the worst but especially winter and having to have heat on at all and more isolation (even before the pandemic)... the house finally sold and i just took a horrific journey to much better weather in northern California...sadly at the worst time everrrrrrrrrrrrrrrrrr with the pandemic and I'm doing worse than ever already... gotta find a forever home...

[@ns.jandali]

She is so amazing, beautiful and adorable. I hope someday they find a cure for this wretched condition

[@andradauifalean7473]

She is beautifull. I like her style so much.

[@jaskajokunen3716]

Andra Uif She is style.

[@itsbulimickitty1729]

*her style

[@koffinkat666]

I like urs

[@YangTheGoddess]

Andra Uif what are ya a "egey" teenager

[@koffinkat666]

What are you? Religious?

[@orangeblossom5362]

Her style is so unique and cool. wow

[@Julie_jul]

Yo you're like 5 gtfo

[@orangeblossom5362]

glob was here! I'm 18, trick!

[@Julie_jul]

Orange Blossom THEN WHATS UP WITH YOUR PITURE AND YOUR NAME HMMMMM!!!!!!!!!!!

[@Julie_jul]

And the name is glob

[@orangeblossom5362]

glob was here! ....I told you I'm 18. My profile picture has no relevance to my age.

[@Ella-he1xt]

I am so blessed for Australia’s health care system. Prayers sent to that amazing family 💗

[@yippehanako]

Her smile is so pretty!! Also, I have Raynaud's syndrome and I didn't know that it could be that serious, I guess I'm just used to it but dang

[@myanna444]

Same

[@FazeNot]

+yippehanako Thank you. I'm sorry you deal with that. I found out recently that Raynaud's can effect the entire body! I guess I shouldn't be surprised because my EM effects most of my body, but my Raynaud's mostly just effects my hands and feet.

[@LunchBXcrue]

What's it like for you? I couldn't imagine that I feel so bad for her, not to mention it sounds like a rather obscure illness so funding and research is probably lacking

[@FazeNot]

+Bring me Peter pan It's definitely very lacking but we're hoping awareness will help!

[@silvermoonmagick8775]

+Rosie Posie i feel so sorry for you

[@shachellepreston7719]

My heart hurts for her. As a Michiganer i can't imagine the hell she goes through with our constant weather change.

[@FazeNot]

Thank you. Yeah, the weather and transitions are the worst almost all the time!

[@asrahy]

Rosie Posie pppp

[@jocelyndelaney994]

Shachelle Preston same for me here in illinois!

[@emsmakeup9225]

IKR I live in Michigan too 😂 I hate how we had no snow on Christmas and now snow is here 🤦‍♀️ almost summer tho 😁

[@songbirdsystem1465]

She recently sold her house in Michigan and is preparing to move to California!!

[@dvnstwrt00]

"It really really helps if you're rich when you're sick." 😰 Heartbreaking 😢

[@carinamartinez7445]

True words

[@janeadelaidelennox7193]

She needs to move to literally almost any other country. I think this would be enough reason for her to get residency.

[@Rose-cu8tt]

She needs to start a crowd fund for her treatment x

[@FazeNot]

thank you, you can donate directly to me through PayPal - [e-mail]

[@davidmoorian2712]

I really hope she will get better

[@shiningstar3312]

Tara ........she could and so could many others if they helped themselves. Disease is d/t nutritional deficiency and toxicity. A raw diet with plenty of pure water and exercise should help her. However she and most people are waiting for a "cure" when a cure could easily be found in ones own backyard. ........an organic garden!

[@chaeeprice449]

People suffer in so many ways.

[@neinja2146]

WHO is on your profilepic?

[@willemdafuck]

Just like everyone who sees your profile picture.

[@arwarashid3351]

You're definitely right ❤

[@greysonsmith2130]

Omg she’s so strong

[@beomgyussandhanitizer997]

I feel so bad for them imagine being in pain and just being helpless

[@studiouscamel]

And I thought acne was bad

[@bluebeaver0]

Shaw Tearlach Just because some people have bigger problems than you doesn’t mean that your problems are small. I have acne as well but seeing her doesn’t make me feel better about it.

[@CrowsCarni]

Acne is bad. i have really bad acne. its just not a rare skin condition like this. acne can get real bad

[@thepersonabovemeisaweeb1736]

*Realize ;)

[@chromatics2004]

LifeSucks hi there lisa

[@бре-ц6ч]

@@bluebeaver0 ARMY( ͡° ͜ʖ ͡°)

[@waterandblue]

I unfortunately also suffer from erythromelalgia and raynauds, took me 4 years to get diagnosed and even then it's because I did my own research, tried more medications than you can believe and nothing touches it, yet my doctor still refuses to prescribe a wheelchair cause I'm only 18 and 'too young to be in a wheelchair' for those wondering it's extremely rare, rarer than being struck by lightning and it's not proven to be genetic. Some people have kids who never show symptoms their entire life, others who have never had it will have a kid who does have it like me. Like her I've missed out so much on life... started showing symptoms at 14 and it's gotten to the point I don't leave the house, never been to prom, can't go trick or treating, can't even stand long enough to make my own food half the time.

[@FazeNot]

So sorry, fellow EM & Raynaud's warrior! That is so common with us -- we have to do our own research, educate, and push to get any treatment or diagnosis because no one wants to touch our cases cause it's too much of a mystery. Is there any way you could change doctors? You should absolutely be able to get doctor's note and recommendation and whatever else for a wheelchair and accessible parking placard! Your chronic pain is VALID; your disability is VALID! Doctors who are dismissive of pain/conditions because of someone's age are stubborn ASSHOLES...completely ridiculously ignorant! People who need wheelchairs PART TIME or all the time for PAIN, to prevent more pain, and all kinds of reasons are common and absolutely valid! Young people have chronic pain and chronic illness and all kinds of disabilities ALL THE TIME; it's a fact. It is genetic sometimes; it comes in many forms and for many reasons. Mine in primary and inherited, but my dad didn't have symptoms until after I did in his 50's (while mine was triggered young as a child and got progressively worse.) Plus the fact that is comes in so many severities and being so rare, that many people can have or carry conditions like this without ever even knowing or thinking it's normal because to their life experience it is their normal, and that's all they've ever known. Someone could have it so mildy they don't even realize, then have a child who gets it severely. And not everyone has knowledge of their family genetic/health histories. So sorry for all your pain!

[@LC-hr2cp]

How did you get diagnosed? What specialist? I have this too, I react to the sun and hot water mostly. Nobody seems to believe that I'm "having allergic reactions to heat". They're looking into lupus and mastocytosis. There's no way they'll think to look for this on their own. (I have a couple rare diseases already so not surprised the answer might be a rare disease)

[@Data_-xw7yw]

L C hi I’m allergic to water too can’t even take a shower any more! When my skin turns hot I get burns all over my body

[@lanlan9767]

I have erthro and exfoiltive chelitis it sucks

[@FazeNot]

Have you had any luck finding a doctor to prescribe a wheelchair since then?

[@hunterw3866]

My very soul screams out anytime someone is put down for a condition they have no power over. I hope the best for her and for her to live a wonderful life regardless.

[@maria-fw7zd]

I love her style so much, it's very nice

[@FazeNot]

thanks 💜

[@TaraSinead]

What a horrible condition, she seems like such a sweetheart.

[@deagaric4765]

she's such a beautiful person, hopefully this video raises awareness and money

[@deagaric4765]

+John Borja can you fuck off?

[@FazeNot]

+Dea Garic Thank you

[@treviniaturner3881]

+Dea Garic lol??

[@sarah-ue4wr]

she's so beautiful. poor baby, i hope she gets better.

[@emilyrose4639]

I love that she collects hats it’s such a unique hobby

[@muhammadosman8999]

and I complain about my acne, thank God iam so thankful!!🙏

[@FazeNot]

Acne is no fun either, physically nor emotionally. Perspective is important, but just because someone may have it worse doesn't mean your pain isn't real and valid.

[@muhammadosman8999]

Haha, your right but acne will go away on its own, and the condition the girl has is way different because she has it all over her skin and she gets burn, so be more open minded before you tell your opinion!

[@FazeNot]

Muhammad osman I'm the girl in the video. I know. Of course acne is much more common, but it can be a chronic problem that never goes away and can be both physically and emotionally painful.

[@FazeNot]

How is saying your pain is still valid close minded anyway?

[@muhammadosman8999]

What!!Your the girl in the video!!I did not know that, I am so sorry, I will agree with u since your that girl in the video!!

[@tinakennedy7026]

I have Reynauds syndrome and my hands are like ice but my face is always on fire.

[@FazeNot]

You probably have both EM and Raynaud's? :( I suggest joining support groups for the conditions on fb; I'm in them.

[@haveagreatday3664]

Yeah...same...Raynaud's sucks. Trying to get help now. Raynauds and fibro are the only diagnosis' I can get. Been searching for answers for other problems with joint pain and random bee sting pain all over and feeling faint and temperature sensitive. Is that part of it?

[@TheMineCart]

Rosie Posie wait r u samara

[@FazeNot]

Have a great day! Getting help for chronic pain is very difficult! I'm sorry you're suffering, fellow cp warrior! Joint pain/arthritis could be from the fibro. Bee stings, temperature sensitivities...yes, that can definitely be part of EM & Raynaud's diseasel...beev stings could be fibro too..they basically all work together to make everything go as haywire as possible heh

[@FazeNot]

Am I Famous Now yes I'm Samara Rose

[@SK-iu2uf]

what the hell, why dont you make a donation for her just like everybody else gets when you make videos like these? I WANT TO DONATE

[@nugu3169]

Pølsen Bodil haha fedt navn😂👍

[@SK-iu2uf]

Amminah Cathrine ahahahhaha eeeey danmark !!!!!

[@corneliaanhoej9650]

Pølsen Bodil ahahah

[@elisajustine1381]

Morsomt navn XD

[@FazeNot]

+pølsen bodil - There was supposed to be... If you wish to donate, please send directly through paypal to: [e-mail] Thank you. facebook.com/hopeforburningrose/

[@cameronmilhomme9675]

LETS START A GO FUND ME FOR HER AND OTHER PEOPLE THAR HAVE THIS AWEFUL CONDITION. btw she is so gorgeous and I love her outfits. I hate that she is miserable.

[@leahjadeturner6018]

I would love to help do this x I dont know how to set up a go fund me page :/ or how it works I'm not good with things like that, do you know how to do it morgan? X

[@shahakhan1239]

She did but it flipped

[@shahakhan1239]

Flopped not flipped

[@TheMrspacenerd]

start a gofundme please. i'll give all I can

[@FazeNot]

+Fabian That's sweet. I had a gofundme up for a while, but all their small fees add up to a lot. So I really don't recommend it. And getting money can mess up my disability income. Donated medical treatment would be great though. :/

[@FazeNot]

+Daniel Littman Thank you. I do like to inspire. Butterfly boy? Perhaps... There was supposed to be info for my mother's paypal for donations for more experimental treatments, to not mess up my SSI stuff...

[@SonicKrystal]

+Rosie Posie - Can you please give us a link to your mothers paypal donation ?

[@FazeNot]

+SonicKrystal I believe you just need her email to send money donations directly through paypal. I'm trying to make sure it's all set up. Her email is: [e-mail]

[@The1972Cutlass]

+Rosie Posie hey rosie, really respect the positive attitude u showed throughout the video, your beautiful

[@claudiacastrillon4440]

She should make a Go Found me account to try the treatment, I'd support her

[@TheeLifted-Bodhisattva]

Claudia Castrillon You would be soooooooooo surprised Claudia how crazy these Autoimmune diseases are this particular one is so similar to Lupus(SLE) the fortunate part of her disease is that there are some manifestations that present frequently in part to her diagnosis .The pain from Raynauds is excruciating and stress alone can trigger it let alone washing your hands in cold water...its a life style change☝️🏽Imagin having to wear gloves just to get something from your freezer at home..🙈Anyhow I have veterans benefits and that is very challenging when faced with a chronic illness, I'm sure she will find the avenue towards health care and the financial assistance involved with it 💕

[@harrydyckenhaand5096]

....you should make a "ComeFukMe" account....i'd be your main contributor.

[@frenchfries731]

OMG IMAGINE THE PAIN😭🤧

[@wen_vickyy]

Jasmine Tingeim sehuun❤

[@hi-vp4wu]

Oml your profile picture bsksbsjsvskdbd.

[@Icespicelover1126]

Poor girl, she's so beautiful and nice. May God bless you

[@cclairebear2608]

That is so sad. She's such a beautiful soul and I hope they find a way to help her

[@evilg22]

Ppl really NEED to stop staring and being rude to Samara !!! shes beautiful and sweet- and i was raised that you dont stare at ppl or be rude- mean to others and treat others as YOU'D want to be treated! !!! why do we live in a world which we care only about whats on the outside instead of what's on the inside?! Please be kind to others and respect others- its what we ALL should be doing- no matter what!☺

[@bellakatherman1477]

evil g Stupid and ignorant breeds stupid and ignorant. isn’t it a shame?

[@jbh666]

Maybe if she dressed normally people wouldn't stare?

[@intriguedhistorian1171]

@@jbh666 No such thing as "normal."

[@Herbalmink]

evil g I would probably accidentally stare just because she looks soooo dope as for being rude I whole heartedly agree

[@twizzlytwist]

I mean her makeup is horrifying

[@jessicab331]

Omg! I cannot imagine being burned constantly! This is terrible!

[@AnAdorableWombat1]

Such a Sweet girl. I can't imagine shat she goes through. I'm dealing with rheumatoid arthritis and the flare-ups are painful. I wish they find a cure for us😢

[@olegskravchenko1960]

Her mother is an amazing woman!

[@_nataliebeck_]

She’s so pretty, she does not deserve this... 😕

[@mandymonroe6295]

Natalie Beck What is with you guys? If she wasn't "so pretty", would she be more deserving of pain?

[@taritangeo4948]

"Only ugly people deserve to suffer"

[@_nataliebeck_]

That’s not what I’m saying, they are kind of like two separate thoughts in one sentence. If she wasn’t as pretty, she would still not deserve this.

[@leomesspidey2825]

So you mean that people who are not attractive or in other words ugly people deserve to suffer

[@sozl5494]

Careful with punctuation on KZbin, people are gonna attack you

[@thezandomsisters4346]

She looks so sad all the time it's horrible

[@FAVORITET0Y]

She's so beautiful. I love her attitude to stay happy.

[@JohnDoe-mv1sm]

Yup. It really really helps if you're rich when you're sick.

[@kaitlinski493]

John Doe that's the saddest statement ever....😔

[@atrl7041]

Kaitlin Ski its the sad truth...

[@kidkatbify]

John Doe not if health care is free

[@sammyblova822]

If you live in Canada there is free health care

[@mosesyang4222]

Katie Brodie no, not if the treatment is considered experimental or therapeutic...same reason why you can't go to a witch doctor and use the health care system

[@al1en_k1ng]

OMG she is gorgeous! I love her. I feel so bad.

[@FazeNot]

thank you

[@alexliloglou3047]

God bless these people, the true heores aren't polititians or the people we read in books. The real hereos are these people. People who know what it is to be in the worst place without a clear veiw of if theyll get better. the true heores are them and people who help them.

[@georgedawson4460]

Oh goodness... There's no such thing like ,,God"... There's only Earth creators, Earth and Karma. Earth creators created strongest life guard - Earth and Karma. Wake up people. Religion is part of human system propoganda, tool to control weak people. And these people like this girl isn't even heroes... Karma is always fair and she gives punishments using your own action or help you, if you're doing something good to other life in this Earth. She's fairest humanity guard - strongest justice. You even know that girl history in previous life? You even don't know that, what actions she did and you can't know of course. So don't you dare to say something good about her. Maybe she was a serial killer or even worst? You don't even know what kind a face she can hide in life. Karma is never wrong, she's always right. Only you're making your future by your own actions. If you will be bad person, you will get so strong punishment someday from Karma, when you never expect. Don't forget that. Karma is always watching you and your good/neutral/bad actions. And if you're bad person, then don't even try to say something bad about this world, that this world isn't fair with you (if you got some disease or something else bad happened to your body). Karma can't control people, but she can control that, what is around those people and target against them.

[@alexliloglou3047]

+Greisis Urbonas sorry what does my comment have to do with religion all im saying is that the bad people get good things

[@W2MyLife]

+Alex Liloglou Because you mentioned GOD. Nonbelievers love to attack and prove their theories. Instead of just letting us (those who believe in God) alone. It is comical. I don't attack others in their beliefs. Yet we are always targeted.

[@alexliloglou3047]

+Candice S. i guess your right but sadly belivers still force their ideas on athiests more, like ISIS or in the middle ages where christians burnt cities down for what we call a religion. Sadly people think one thing is right and everyone should live that way but remeber, that is not our way

[@OfficialCynical]

How are they Heroes in any way shape or form? More like examples of how good we have life and how special we are to not have bad conditions

[@yooshie]

I still don't get why people say money can't but happiness although it's the happiness of many in need

[@aliceinwonderland1339]

I think they're drawn to her unique style not her red face

[@tisthysireaustin6030]

I personally like her style😄

[@gobable]

Me 2

[@mysticalplatinumespeon3176]

I like it to

[@DeeeGeee]

Stop lying.. BRUH!!!😆😂😂😑

[@cashtaylor9804]

I agree... let her be as unique as she wants!

[@AbiRoseXx]

Praying for them.

[@skwaaaaa]

Donate, praying won't help her in this present moment

[@LTGinobi]

+Ross_AFC U SUCK PRAYING HELPS rely on god

[@Lakerzfanboy4]

Money finds cures, not prayers lmao.

[@jessicat4371]

+Shammgod Santiago She can believe in prayer if she want to. Why not come up with your own comment instead attacking somebody for theirs.

[@AbiRoseXx]

+Misan Sathanas 'instead of doing something' - please do tell me what I'm supposed to do then? I don't know how to help them, but at least I contributed a positive thought. I would be willing to bet that you have likely not 'done something' either, and you have contributed nothing but negativity. If you have nothing nice or constructive to say, please don't say anything.

[@vanellope681]

This is really sad. I hope this girl and her dad get better.

[@sandbach7195]

oh honey, I'm so sorry. You are such a special, beautiful being. Please try to stay strong.

[@x.abbi.x5307]

I wish I had a million Dollars to give to her😭

[@x.abbi.x5307]

How has my profile picture got anything to do with hackers being stupid.🙄

[@eliana_strong]

Would that help her?

[@gracesmom79]

@@eliana_strong yes it would so they could pay for the things they need so the won't get hurt or even die

[@ANNA-fg3rz]

me too

[@TheRitaish]

please I need to talk to that girl I have suffered from that condition and I learned ways to control it, please let me help her

[@TheRitaish]

+TheRitaish please let me help her

[@TheRitaish]

+TheRitaish PLEASE LIKE THIS SO SHE CAN SEE ME

[@00Indeedibly00]

I would love to help, but I don't even know if her name is available to look up and maybe find an email. Just on a curious note, how do you deal with the condition?

[@jaimebaird5699]

I saw her commenting on other comment on this video her name is RosiePosie.

[@jaimebaird5699]

+Jaime Baird I mean Rosie Posie she commented on the comment below yours

[@abrarvadgama3378]

I hope she gets well (also the father)

[@behabtwa]

hard to imagine how life must be like for them.

[@clairemora7715]

The parents are amazing and so supportive of their daughter. God bless Samara and her family.

[@shemarviontaturner6691]

I could never feel like I’m burning all the time , I feel so bad for her ! But I’m proud of her for dealing with this constant pain 😕💓.

[@Dumbergy]

I wish she had social media so I could support her, she seems so lovely.

[@bethbell6817]

I feel so sorry for her and her dad, and I love silly hats too, I hope you live a happy life😭

[@bryony7564]

I feel so sad for her 😩 I hope you get healed beautiful girl ❤️