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

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A housebound woman feels like she is burning alive from the inside because of a rare genetic condition. Samara Rose Ingraffia suffers from erythromelalgia or Man on Fire syndrome, which leaves her feeling like she is experiencing constant second degree burns. Amazingly Samara, who lives in Michigan, also suffers from Renauld’s syndrome - an equally rare condition that means her body reacts terribly to even the slightest drop in temperature. To have anything like a normal life Samara can only be exposed to a temperature of 17 degrees Celsius - anything higher or lower will lead to incredible suffering. Her father Brian is a former college professor who is also housebound with the same two conditions.
Videographer / Director: Dustin Bacon
Producer: Dan Howlett, Nick Johnson
Editor: Sonia Estal
If you wish to help Samara Rose, visit her Facebook page for more information on how to donate:
/ hopeforburningrose
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[@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:'(

[@rebecca-yr8cm]

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.

[@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.

[@cnre]

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

[@IKEAsharkBBL]

@Didi you spitin straight fax 😭

[@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.

[@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?

[@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.

[@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 😔😭

[@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

[@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

[@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

[@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😊

[@screamingtima1318]

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

[@samantagrigutyte192]

Screaming Tima me too

[@aayannam]

Screaming Tima me to

[@siljedahle7741]

Screaming Tima donate her some silly hats!

[@byrnadettejohnson1866]

same here

[@lelychan8883]

Same

[@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

[@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.

[@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.❤️

[@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

[@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?

[@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...

[@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

[@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.

[@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

[@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]"

[@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.

[@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

[@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.

[@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

[@OnlyEmma]

such a beautiful girl, hope she gets help soon.

[@FazeNot]

thank you

[@negomires2745]

she ded

[@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

[@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

[@taxidoll3]

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

[@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]

[@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.

[@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

[@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

[@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

[@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

[@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.

[@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.

[@malkalevanna1071]

She looks like such a sweet person!!!

[@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/

[@Ella-he1xt]

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

[@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 :)

[@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

[@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

[@maria-fw7zd]

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

[@FazeNot]

thanks 💜

[@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

[@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!!

[@kenziehinkle3358]

I have this disease and it’s awful it ruined my life burning everyday to freezing to death .I can’t do anything without burning. anything I eat burn’s me clothes makeup bath products using any emotions stress can cause it to burn mostly when I cry .getting out of the bed is hard showering getting ready. I don’t really go outside because of the sun but when I do go outside I just push myself though it .and try to survive winter scares me lol because I’m burning alive and freezing to death like outside it’s so cold and inside my house I have to deal with heat so it’s like a nightmare .not happy that winter is coming up .kinda nervous because my body feels more pain numbness i breakout more everywhere I can’t feel anything like my body is burning so much that I can’t feel when I grab something hold something do anything. I feel like I’m dead .my body feels so weak that I feel like I’m not alive anymore.my mental health has gotten worse like I don’t know who I am anymore .i hate myself so much the way I look .my body I think i’m disgusting never hated my life this much .I’m trying to stay positive .and trying to keep living it’s hard because sometimes I’m sick of living my life .it gets old .everyday is the same and I feel like I’m never going to change.and I could have this for the rest of my life that’s what the doctors that I went to told me .erythromelalgia is very rare disease so it’s hard to treat which sucks. dealing with this and other problems in my life is so hard. but I’m not giving up .I haven’t felt happy in idk how long .everything feels fake not real anymore idk how to explain it . I had this disease when I was 15 .and now I’m 18 years old .I’m kinda used to pain it feels normal .but I wish everything could just stop .I’m trying to fix my life before it ruins me more and more everyday .because I’m trying so hard to be brave and hold on even if I don’t think I’m brave . I try not to overreact or be useless it’s just hard to do anything. and I’m embarrassed about my redness my rashes my broke outs my size .when I do go out it’s like my heart racing .like I’m scared of people of them looking at me .I’m so insecure that it’s bad every time I look at myself man I say horrible things to myself. I’m so awful to myself like it’s hard to love yourself sometimes but all I can do is try to get help and try my best even if it’s not good enough. when I see people that have my disease which I don’t see to offer because again this disease is rare. it makes me feel like I’m not alone. feel sorry for her I hope she better now because this disease is no joke it’s a nightmare:/

[@wojtulacehoe5089]

u ok now?

[@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.

[@ns.jandali]

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

[@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

[@yooshie]

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

[@thezandomsisters4346]

She looks so sad all the time it's horrible

[@jxsminevaughan2401]

She should do KZbin videos like makeup and fun videos to help other people

[@FazeNot]

+jasmine vaughan My mum wants me to be a "youtube star," ha. I am really interested in making short films/fashion films, but it's hard with all the white noise from my fans and all... And I am terrible at talking :P

[@ReineDeLaSeine14]

+Rosie Posie an external mic may help

[@ohkreally8913]

+Rosie Posie You should! You would be an inspiration and I would love to watch your channel! I would subscribe :) Let us know!

[@jxsminevaughan2401]

+OhKReally we should all be youtube buddys and help each other what do you think lets support each other

[@FazeNot]

Yus!

[@jessicab331]

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

[@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!!

[@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 ❤

[@preranamaity7056]

I suffer from the same condition ( in my case my skin burns when temperature rises) and I know its awful but girl don't you worry you're not alone

[@moyo6606]

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

[@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?

[@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

[@cynthialemus2591]

I have erythromelagia in my face, neck, chest, and arms. I cannot be in a room above 56 degrees. My condition is sever and not responsive to treatment. My husband and kids cannot spend more that a few minutes with me because the cold I need to live is unbearable for them. I’m sorry you are suffering with this so young. You are not alone. If you ever need to talk to someone who understands. Even just for someone to hear you when you beg the universe for 10 minutes…just moments relief, I’m here.

[@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!

[@_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

[@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??

[@greysonsmith2130]

Omg she’s so strong

[@amywhy389]

if i were a billionare these are the kind of people i would try to help out, unlike most hoarding it all for themselves *HEM-HEM TRUMP*

[@evalynnkittykat6096]

😂

[@lilys226]

Agreed

[@pmassis27]

I Feel So Bad!My life is like my IPad falls I'm Dead😂But This is terrible!

[@sara4024]

I want that small loan of a million dollars

[@user-um5qc2bb7j]

psionicsquid He has the ability to do so many good things... but he doesn't. Bringing tears to my eyes that there's so many cures and so much love to be given from these rich people and they do not give it.

[@nelandroide]

I wish I could be friends with her, she seems so nice and funny, also her style is awesome

[@itswo0d]

Me too

[@Brandon11746]

Natalia Vargas im nice and funny

[@mysticalplatinumespeon3176]

Natalia Vargas same here

[@lilliemaiparker698]

Okay ppl let's just all get together and become friends! now who likes the color purple😁

[@kendall7048]

same

[@ss5686]

God bless them. It is unimaginable what her and her father go through. Reminder to never pick fun or tease someone for looking different because we don’t know their own personal struggles.

[@nicolegsell5052]

this is incredible. I don't think I would be able to live with this condition. I would probably commit suicide so the fact that she is just so brave. Incredible

[@skwaaaaa]

,

[@nicolegsell5052]

Ross_AFC me?

[@nordenconrad14yearsago45]

Suicide worsen problems and causes trauma to family members.

[@nicolegsell5052]

Norden Conrad but you have to understand that I don't think that I could handle this pain so the fact that she is is so awesome and impressive.

[@nordenconrad14yearsago45]

she's really pretty from inside the red skin. May God cure her... though many doctors are in for a research while performing rare things

[@TeenDream888]

this makes me again question why parents who have certain genetic disorders would even consider having children, and not adopting. it makes me angry when i see how idiotic and selfish people can be.

[@alois2193]

TeenDream888 i kind of agree

[@lexiedavis6122]

TeenDream888 we all have some types of genetic disorders in our DNA make up that can effect our children. People just have to raise awareness for these different disorders so there can be effective treatment in time

[@doubtful_seer]

TeenDream888 he didn't know when they initially had children. She confirmed that herself in the comments.

[@alternifeind15]

TeenDream888 some people can't help it. most women don't even know that they're resistant to certain types of birth control until an accident happens

[@nelandroide]

DON'T BE RUDE, first of all you don't know them, you really DONT KNOW THEM... And second, she said that his father started with symptoms in his 50s so please, let's try not to be THIS judgemental if we don't know the people...

[@FAVORITET0Y]

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

[@sarah-ue4wr]

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

[@joseph9638]

Why doesn't someone make her a gofundme account?

[@Oliver-fw6rc]

There is one I think

[@liacargill4341]

She had one

[@beast3940]

She had one but it wasn’t successful and didn’t raise a lot of money.

[@bethbell6817]

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

[@robertjoergensen]

Why would you have a child when you have this condition!?

[@jessicat4371]

That's a pretty ignorant statement. Does it make you feel good to be offensive? Don't answer, I don't really care what you have to say.🚽

[@robertjoergensen]

Jessica Smith No? I'm just telling you how I feel about this. BTW You are being preatty offensive as well. Plz explain to me in a better way why you think I'm ignorant?

[@Egomagno1012]

Well there would still be the possibility the child wouldn't be born with it. Her mother seems rather healthy, she doesn't only receive her fathers genes.

[@jessicat4371]

+Misan Sathanas Using a big word like that doesn't make you look any smarter. By the way, is that all you got? If you think your hurting me by calling me a pretentious bitch, you'd be wrong. I Don't know if you're a little boy or little girl, but you'll have to do a lot better than that because I've dealt with many fucktards in my life, and you're pitiful to say the least. Go start an argument with someone else, you won't win with me! 🚽🚽🚽

[@jessicat4371]

+Misan Sathanas Because you are dissing me for caring for others. You have no real reason to put me down, and I haven't said anything insulting to mature, intelligent, and kind-hearted people. Nope just ass hats like you! I'm going to run some errands as I have better things to do than try to fix stupid. Go ahead and think of an unfounded and unintelligible thing to say while I am gone, or will you attempt to troll someone else? You can't hurt me, but if you start picking on another innocent person, I will most likely find you and make you look like the absent minded fool you are, if they don't do it themselves which I hope they do cause I can only tolerate your crap for so long.🚽🚽🚽

[@frenchfries731]

OMG IMAGINE THE PAIN😭🤧

[@wen_vickyy]

Jasmine Tingeim sehuun❤

[@hi-vp4wu]

Oml your profile picture bsksbsjsvskdbd.

[@ToriC524]

girl, those brows. teach me your ways. sorry but i mean

[@kikiloorose7741]

Fr they're so perfect

[@melovx3928]

@LowBudgetLavie Her eyebrows are still good

[@KiwiBirb63]

"The temperature must stay at 62 degrees!" Mr. Krabs

[@khjkk2117]

Kiki G "Don't. Touch. ME THERMOSTAT!!!!!!!"

[@luka7263]

Kiki G OMG LMAOOO

[@ihaveosteoporosis8658]

Dont. Touch. ME THERMOSTAAAAAAAAAATTTTTTTTTTT!!!!!

[@SaraH-jn5db]

If you have such a debilitating condition why would you choose to have children? You can adopt or something but it's awful to create a child who could live a life of pain

[@aellalee4767]

Sara Grace Right? I have a few friends who suffer from disorders or have an increased risk that they fear because their parents chose to reproduce and subject their children to suffer the same symptoms they have, and struggle more than most already have to. I'll never understand why people are so set on making their own kids when adoption is there.

[@emmy9574]

I really feel bad for her she acts so sweet IM PRAYING FOR HER

[@brennasimpson1843]

She’s so beautiful. And that family is so sweet. I hope that eventually they can find a cure... 😕

[@lyssabowens4309]

I wish her the best at life

[@XxADJMTZxX]

they heard my mixtape

[@TheMrspacenerd]

Even though that's fucked up to say. I did have a little giggle.

[@spicybeast1018]

I got to agree with Fabian

[@ermergerdrerndermpersern6033]

+Fabian yeah some positivity is always nice

[@ermergerdrerndermpersern6033]

+Ermergerd Rernderm Persern or humor lol

[@book6885]

+Fabian Nice name

[@bryony7564]

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

[@abrarvadgama3378]

I hope she gets well (also the father)

[@behabtwa]

hard to imagine how life must be like for them.

[@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.🙄

[@elianastrong8125]

Would that help her?

[@gracesmom79]

@@elianastrong8125 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

[@Dumbergy]

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

[@clairemora7715]

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

[@KittyCat-sy4fx]

she is amazingly beautiful and the best I hope for her happiness and never want her sad

[@Rml892]

People stop hating on her dad. As you heard the disease is very rare...can't a man have hope that his child won't be sick?

[@avrilcadeul3207]

Mubanga Lumpa yeah but at the same time, it's a genetic disease so there was a high chance for it to happen :/

[@itsbunessa]

No, because genetics are a thing and most of us know what the chances are before we make children. He knew. He was irresponsible and cruel.

[@itsbunessa]

His wife is irresponsible too.

[@neonglass3603]

Exactly, people who have genetic disorders can still give birth to a healthy child, it depends on the genetics of the partner as well and the percentage of how likely the disease is to be passed on. If it was 20% or less I wouldn’t let this condition stop me from having a family.

[@maggey5501]

Infectious Waste Honestly they should've just adopted a child instead of birthing a daughter that describes her life as hell on earth, especially when the disorders are that painful!

[@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 😕💓.

[@cclairebear2608]

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

[@SpotsAndColours]

she is so beautiful and talented. god bless her.

[@sandbach7195]

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

[@user-dq9ne3bm5l]

Sounds mean, but some people just shouldn't reproduce. He knew he had it and had a daughter anyway ... And so the suffering continues.

[@FazeNot]

He didn't know when he had children. I agree but people keep doin' it anyway.

[@GnosticAtheist]

We dont know the full story. For all we know he didnt know when thy got pregnant. But I agree, dont reproduce if you have a severe genetic condition. If there is something we have enough of its humans. Adopt.

[@VanCityLuver]

Rosie Posie You are such a strong person and I hope one day you don't have to go through this anymore

[@FazeNot]

Taylor Anne thank you

[@jazzminabat8798]

Rosie Posie Sorry if you've answered this. When was he diagnosed? I wonder if doctors know why your symptoms presented at a younger age or perhaps they know more now than when your father was younger? I send my love to you and your family.

[@purrrgat0ry]

She's so adorable. 😭❤️ I pray for her.

[@serenamachado6077]

Ya same

[@Hlze369]

where can i donate money for her ?

[@ScottMcDaniel]

+Saitama facebook.com/hopeforburningrose/

[@Hlze369]

Scott McDaniel thanks dude :)

[@lourdesguatura5430]

+Scott MsscDaniel

[@renagrin3312]

She looks like an amazing person and I really do hope she and her father are cured 🖤

[@sujatadas4962]

U r so delicate..like a baby..u do look like an angel.. take care dear...do all sort of things which can lessen the pain. I wish u all the luck..may u get well much soon❤️

[@echo997]

Sujata Das this is so sweet