“I am Burning Alive”: Girl Suffers From Rare Skin Condition
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- Опубликовано: 26 дек 2015
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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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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
Marilyn Edwards :( Me Too I Agree
Well, you dont know what happens in Russian hospitals. Youre Lucky to have such a good conditions
Торгаш I don’t think you know anything about me or my condition?
@@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
I have the same condition.
"It really helps if you're rich when you're sick" That just about sums up healthcare in America. It's the best in the world, if you can afford it.
Right? makes me sick
That sums up housing here to.
I'm so glad healthcare is free in the UK.
glad to be in canada
Miku Sab I bet you can’t wait to get sick you’ll be waiting for ages
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! ❤
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
@@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.
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.
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.
@@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.
What’s the point of having a cure if it can’t be afforded
Facts
Best comment 👆🏻👆🏻👆🏻⭐️⭐️⭐️⭐️⭐️
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.
@@rose1742 is that supposed to be reassuring? awesome, just a few more years of agony for these people
@Didi you spitin straight fax 😭
she seems really sweet i wanna give her a hug:'(
and her father :(
Me too
Me too 💙
My name is Samara I thought I was the only one!
Thank yous. I love hugs. Hugs are helpful.
after watching this, I am thankful for what I have now...
+Oblivious Gamer you're oblivious to the world around you
you got aids
+Le Andy rude
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
Oblivious Gamer you're name is oblivious :)
Her hands constantly shake it you look close when she holds them up. Poor sweetie. I hope we can help her.
It's from the pain and the nerve damage 😔😭
She looks like a beautiful and delicate forest fairy🧚🏻♀️
Ikr?!? :D
awwwww thank you, love that 🧚
On a positive note her art and fashion are beautiful
agreed!😊
+Pokemontas Thank you
Hell yea it is!
+Rosie Posie I really like your style !! :)
.ikr its really cool I feel bad tho
Watching these medical videos makes me very grateful for the normal body I have.
True
Me to
"Normal"
Same. Thank you, God. Or whatever/whoever created this incredible universe.
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?
She is so pretty but it pains me to see her sad 😢
Same :(
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
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.
@@xanipoo oh wow i will look into that
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!
sorry you suffer from them too. it is so frustrating. i gave up on doctors
I hope that u will have a beautiful healthy and long life😊
i touched the stove when i was little i cried like a bitch for that. can't imagine what shes feeling
Yea and i burned a small patch of skin with sulphuric acid.İ can't imagine the pain it must be causing her...
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
As a person who cooks alot, burns are common.
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.
I wish I had 60 thousand dollars to give to her.
Screaming Tima me too
Screaming Tima me to
Screaming Tima donate her some silly hats!
same here
Same
Poor girl! She is so pretty and so kind. It hurts seeing her in pain
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.❤️
“It really, really helps when you’re sick if you’re rich.” That hit hard.
Welp she's is the best country to get rich
Stem cell treatment is expensive no matter where you live
love her style! thats the exact meaning of "expressing yourself"
I think she's herself completly as she spends allot of time alone
Yeah!! |-/
Lauren Cønnølly yeah
Lauren Cønnølly i
she looks like she spends a lot of time on tumblr
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 ✊
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...
She needs to start a crowd fund for her treatment x
thank you, you can donate directly to me through PayPal - alienmermaidqueen@gmail.com
She has a great personality and is a nice person
She does not deserve this
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. :)
Jacob Spencer Gaming what personality ?
I agree with you
Nobody deserves this.
Jacob Spencer Gaming its true
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
Fluffy Dragon yea i agree
yes!
Fluffy Dragon I think she is
HOW TO DONATE TO HELP SAMARA
Send donations via paypal to:
ariellaingraffia@gmail.com
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
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?
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.
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.
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 :(
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?
Jack Septiceye God doesn't help cure things fast. He has a plan for her and he just isn't ready yet.
I meant to say that to Secular Unity. Sorry
Natalie Printup So his plan was to make her suffer first?
“he just isn’t ready yet”
Ready for what?
Natalie Printup so you're saying that Jesus miracles where in deduct defiance of God?
She's so adorable. I feel so sad that they have to go through this. It must be a living hell =[
I know right, I feel so bad for them
+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!
+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!
hell is much worse pray repent end near
+Juiceinmycup 777 - I know hell. You do not know hell.
This has got to be miserable. I pray that you will be healed in Jesus'name. Don't give up.
Amen
Amen
Amen
Amen
Amen
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
Her hats are adorable
An Cermet sexist...
@@naydd9459 why?
@@ihavenonamehi813 Don't assume anyone's sex.
She could sell them!
An Cermet. Her clothes are very cute too! She's seems very creative.
That would be so painful and hard to constantly live with that.. My best wishes to her.
it would be..i wish i could give her that 60k dollars. i wouldn't spend it on anything else. 💔
Army everywhere!!
i wish i could donate 100k to her..
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
I feel so bad for them imagine being in pain and just being helpless
I love that she collects hats it’s such a unique hobby
She seems like such a nice person she doesn't deserve this
Rice Head i agree
Thanks to the father.
Rice Head yeah :(
Nobody deserve that
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.
+Tyler Drent Really??????? ;-;
Izumi AMV's yep, all because she walked into a sauna thinking it was a pool shower, and she died.. (not lying)
Omg..... i'm so sad right now T^T
Thank You for the information
No, don't listen to those trolls. She still has a youtube channel, you can go check it out
I still don't get why people say money can't but happiness although it's the happiness of many in need
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.
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
She did but it flipped
Flopped not flipped
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.
Yep, so true
+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
+TheRitaish I think this condition needs to be broadcasted more so we can raise money and help people like you.
+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...
+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]"
"It really really helps if you're rich when you're sick." 😰 Heartbreaking 😢
True words
She needs to move to literally almost any other country.
I think this would be enough reason for her to get residency.
“It really helps if your rich when your sick”
I love her style so much, it's very nice
thanks 💜
I love her silly hats ❤️🙌🏼
Me too
Nooooo maybe that's where she gets her motivation to keep going
Hehe they are cute
Hope Elizabeth same they are so silly and cute
I have the monster hat she has!!!
Her style is so unique and cool. wow
Yo you're like 5 gtfo
glob was here! I'm 18, trick!
Orange Blossom THEN WHATS UP WITH YOUR PITURE AND YOUR NAME HMMMMM!!!!!!!!!!!
And the name is glob
glob was here! ....I told you I'm 18. My profile picture has no relevance to my age.
I am so blessed for Australia’s health care system. Prayers sent to that amazing family 💗
After this video i realized that i’ve been complaining way too much when instead i should be thankful that i don’t have to go threw the horrible pain she’s going threw and i really hope that she gets better ❤️
I wish i could donate.
Same
Same . Nice profile pic by the way
Lily Frie Marina 😍
+ameliaaa lol I know right she's my queen
Lily Frie yess
Omggggggg shes soooo beautiful❤️❤️ simple, delicate and innocent. I wish people could help their family.
Ikr she is so beautiful i wish her good health and i hope they make a cure.
Beutiful World me too!
Beutiful World then you sir are a trap
yeah she's HOT ;)
Whiterun Guard omfggggg
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.
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.
start a gofundme please. i'll give all I can
+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. :/
+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...
+Rosie Posie - Can you please give us a link to your mothers paypal donation ?
+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: ariellaingraffia@gmail.com
+Rosie Posie hey rosie, really respect the positive attitude u showed throughout the video, your beautiful
such a beautiful girl, hope she gets help soon.
thank you
she ded
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
girl, those brows. teach me your ways.
sorry but i mean
Fr they're so perfect
@LowBudgetLavie
Her eyebrows are still good
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.
Wait what how old were you
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
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
I live in mass too squad (and have raynauds)
I have both of the diseases and let me tell you it’s not easy to deal with
The mom is a superstar. Works to support them and then comes home and helps them as much as she can
I feel so sad for her 😩 I hope you get healed beautiful girl ❤️
This is so heartbreaking. I couldn't even watch till the end. Sending love and light to them.
Her hair is absolutely stunning.
Yea I kinda wish I had it.
Tf r u talking about lmao
I agree, man I wish I had hair that.
It really does though no joke.
Well she looks beautiful
She looks like such a sweet person!!!
I have had EM for 6 years! I had to retire from teaching (. 32 years in a career I loved ) because the pain is too brutal!! My pain level is never lower than 6 and flare ups!! Good lord it feels like 1,000!!
I’m sorry both of you have this insidious condition!!! All I can say is I understand, and I suppose we can do the best we can everyday to live our lives!!! Take care!!!
I have it too .. cold AC and less movement and a bunch of medicine like cortisol and anti- immune system drugs helps after some time..
Teach online if you can, to fill your time with what you love
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:/
I have Reynauds syndrome and my hands are like ice but my face is always on fire.
You probably have both EM and Raynaud's? :( I suggest joining support groups for the conditions on fb; I'm in them.
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?
Rosie Posie wait r u samara
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
Am I Famous Now yes I'm Samara Rose
And I thought I had it bad with my severe eczema. She’s beautiful I hope she feels better..
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.
Same. I thought my eczema was bad
Its not a competition. Someone will always have it worse than you. Youre allowed to have your own pity party.
same.I keep finding a new eczema spot every day and I get so angry
Kay Hope
I just feel bad for feeling bad for myself when other people have it so much worse
She's so beautiful. I love her attitude to stay happy.
Why doesn't someone make her a gofundme account?
There is one I think
She had one
She had one but it wasn’t successful and didn’t raise a lot of money.
I think they're drawn to her unique style not her red face
I personally like her style😄
Me 2
I like it to
Stop lying.. BRUH!!!😆😂😂😑
I agree... let her be as unique as she wants!
Yup. It really really helps if you're rich when you're sick.
John Doe that's the saddest statement ever....😔
Kaitlin Ski its the sad truth...
John Doe not if health care is free
If you live in Canada there is free health care
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
The parents are amazing and so supportive of their daughter. God bless Samara and her family.
Poor girl... She has an amazing spirit! Bless you 🙏
Omg! I cannot imagine being burned constantly! This is terrible!
She is so pretty and I love her style
Dvaixh Xbaixba I was thinking the same! Love her style
Weirdo Lilac Girl coming at you hi
Same
Poor girl, she's so beautiful and nice. May God bless you
My heart is breaking for this poor girl and her dad,beautiful-souled people deserve all the best,hope there’s some kinda pain relief,don’t give up.
She looks so sad all the time it's horrible
And I thought acne was bad
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.
Acne is bad. i have really bad acne. its just not a rare skin condition like this. acne can get real bad
*Realize ;)
LifeSucks hi there lisa
@@bluebeaver0 ARMY( ͡° ͜ʖ ͡°)
oh honey, I'm so sorry. You are such a special, beautiful being. Please try to stay strong.
She’s so beautiful. And that family is so sweet. I hope that eventually they can find a cure... 😕
What a horrible condition, she seems like such a sweetheart.
May god bless her and her dad
Yes, he blessed them a lot, it shows... Stupid religious people...
FedeSkillArg Really? 😐 Gosh you do not need to be that mean 😐. Yeah.. 😒
Oh yeah, we can see just how much God loves her and her dad. 😂😂
FedeSkillArg yeah I think "god" has done enough for them....
Why did he give them this horrible condition in the first place???
I feel so bad for her. I almost cried.
Bless your heart
Keep being strong. You're in my prayers, Samara. You and your family. God bless you.
She should make a Go Found me account to try the treatment, I'd support her
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 💕
....you should make a "ComeFukMe" account....i'd be your main contributor.
She had an amazing art talent...She is very strong..God bless her..
thank you
Rosie Posie You are welcome..pretty girl
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.
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
She looks like an amazing person and I really do hope she and her father are cured 🖤
😪 God please heal this child 🙏
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 ! ❤️
Nishika Amin she is such a beautiful kiddo!! My heart goes out to her as well!!
Crying srsly?
Demonologist some people are sensitive 😉
Lєαh Thє Chєєtαh they are pathetic, in older days there where no such things
Demonologist okay then i guess.
God bless her and her family .
Kawaii Unicorn we meet again kawaii unicorn. I see you all the time!
This is wierd I keep seeing you in video comments
She is in God's blind spot apparently eh?
Why would God bless a family with a young women she cursed?
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.
I hope she is doing well now. Hugs and prayers for you 🙏❣️
I really hope she can be free of pain and finds something or someone that can help her. Many prayers to you Samara♥️‼️
She should do RUclips videos like makeup and fun videos to help other people
+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
+Rosie Posie an external mic may help
+Rosie Posie You should! You would be an inspiration and I would love to watch your channel! I would subscribe :) Let us know!
+OhKReally we should all be youtube buddys and help each other what do you think lets support each other
Yus!
People suffer in so many ways.
WHO is on your profilepic?
Just like everyone who sees your profile picture.
You're definitely right ❤
Awww, poor sweet kid. I hope things get better!
Gosh this must hurt so much. What a trooper, both father and daughter (but especially daughter, given society's preoccupation with feminine appearence). Truely inspirational people
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
Same
+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.
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
+Bring me Peter pan It's definitely very lacking but we're hoping awareness will help!
+Rosie Posie i feel so sorry for you
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
Pølsen Bodil haha fedt navn😂👍
Amminah Cathrine ahahahhaha eeeey danmark !!!!!
Pølsen Bodil ahahah
Morsomt navn XD
+pølsen bodil - There was supposed to be... If you wish to donate, please send directly through paypal to: ariellaingraffia@gmail.com
Thank you.
facebook.com/hopeforburningrose/
This brought me to tears. I am so sorry to hear of someone struggling with this. Beautiful girl. Why can't insurance help her?? Something...it is heartbreaking.
Poor girl her family must be grateful for her being brave
Omg she’s so strong
She is so amazing, beautiful and adorable. I hope someday they find a cure for this wretched condition
Im so sorry you have this awful disease , you are so Brave and Beautiful and so Talented.
Your Father raised you to be a good person, just saddens me that the Health Care System cant help you.
You Deserve Justice.
Praying for You My Sweet Girl ! 🙏🕊️💗💜💗
Thank you for sharing your story. After searching for rare illnesses for a long time. Doctors not knowing for 5 years. Your video helped me see not only was I not alone. But gave a name to my illness. Bless you!