Me & My Butterfly Skin | Living Differently

Teenager Sohana has Epidermolysis Bullosa. Sohana lives in excruciating pain from the skin condition and goes to great lengths to protect her fragile 'butterfly' skin.
Me & My Butterfly Skin
Producers: Nathalie Bonney, Ruby Coote
Editor: Thom Johnson
Director: Bahareh Hosseini
Series Producer: Charley Sutton
Executive Producer: Alex Morris
Head of Production: Adam Mudditt
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[@brewilson8696]

i used to go to school with someone like this. he was such a sweetheart and pure. he died in the hospital. at our school, we wrote notes in balloons and let them go into the sky. it was a beautiful time, and i hope he’s resting peacefully.

[@AdventuresOfAnAlien]

R.I.P may he rest in peace

[@Redhaart]

MAY HE RIP

[@katieelin.]

This comment made me on the verge of tears 😢🥺

[@kapiljetwani3540]

Rip💐

[@earlmcraw5606]

This just brought a tear to my eye.

[@thathobbitlife]

Oh gosh this brave child how can we help her?

[@CureEB]

Please do visit www.cure-eb.org we would love your help! Thank you so much for your kind words, Sharmila (Sohana's mum, Founder Cure EB)

[@hhaaileyy2448]

Heather Huber i believe there are some products that may help people with EB, like creams, but there is no cure whatsoever yet. hopefully one day

[@creamydxyss7879]

I think she is queen of butterflies

[@whoopsieee]

Oh god 666 likęs!

[@jessicakat2807]

Heather Huber there’s also a charity called Debra which help provide support people like her and myself who have EB!

[@AG-ez9by]

7:07 “Mentally, I’m probably the same” No girl, mentally you are so many times stronger and better. Thank you for your bravery and showing me how life can be enjoyed despite the circumstances. x

[@stephanievlado6125]

A G I was literally thinking the same

[@apou01]

I struggle with my life and have to take anti-depressant and look at this girl

[@myheartwillstopinjoy8142]

@@apou01 I get what you mean to say, but just know that your struggle is just as valid. Not because you perceived it as lesser that it's invalid or not real. It's good to understand that other people might have it harder than you and be grateful for what you have and they don't, but that doesn't make you unworthy of feeling the way you feel. Power to you 💜

[@momkatmax]

Suffering pain can lead to either bitterness or a deep understanding of life. She has the latter and along with her intellect we will hear great things from her in the future.

[@kristen8100]

I was thinking the same thing. God bless her

[@bliss7166]

She seems so intelligent and well-spoken for her age! She’s such a gorgeous girl and I wish her the best :)

[@hermionegranger3526]

That's sweet. I think so too

[@perfectpoison1089]

my "problems" compered to it... are nothing. she is perseverance

[@simonmonsoon]

Do u mean "compared"?

[@gracecatacutan4754]

I don't get why people would always compare their problems with others. Like how every person is unique in their own ways, problems are as well. Just sayin..

[@perfectpoison1089]

YEP... it was a typo. thank you NEKO chan! i always remember what neko means but i forget the honorific title

[@perfectpoison1089]

to use it as a inspiration, that is my answer. thank you for share your thought.

[@jula423]

such a patronizing comment

[@Jana-ee4ip]

I will never complain about my acne again. This is a real problem, not a couple of zits on my face

[@antonioanarchism499]

o w o There needs to be more people like you.

[@elvisishakmboni4333]

o w o we get that but such things make acne and a lot of stuff complain about look like child's play.

[@aknurhaydarowa1924]

Jana 241 even i will not complain

[@victoriajean586]

You're allowed to complain. Just because she's got a severe skin condition doesn't make your acne any less relevant. Acne in itself hurts like hell. I never got it until adulthood. Among other health problems but that's another story. But don't minimize your own issues. It's ok to feel the way you do about it. You're valid as well hun.

[@clarab.8469]

Such respectful and wise comments we read there 🙏

[@alonelystar1155]

Is no one going to talk about how *beautiful* this girl is?!

[@h4nad657]

cause i dont want to be in prison

[@anvenzz]

H4NAD 💀💀💀

[@arttravelvlogsgm9019]

@Michael Collins i just loved your comment.. i had a scar on my face. From childhood. M it took away all my confidence and strength. When the ppl around me used to say i look beautiful i knew they are just trying to sympathetic to me.. i hate that word now

[@theunconventionaldeal3879]

@@arttravelvlogsgm9019 I love scars.

[@Fairydeodorant]

H4NAD I don’t get it. Why would u be arrested for complimenting her?

[@shakerapatel-yz8di]

nobody's gonna talk about how strong her mother is the way she devoted herself thats priceless

[@00kaza00]

that's what she is suppose to do as a mother....

[@laryssalima6435]

Well, no, she is her mother after all.

[@MrsLane-bv8ng]

As a mother, it would be immensely heartbreaking to watch your daughter live in pain and discomfort like that every day of her life. In my opinion, that takes a certain strength some people can’t even imagine.

[@Correctrix]

Really, what else can she do?

[@MrsLane-bv8ng]

@Daniel Youngblood I’m speaking of mental strength not physical strength, like I said, some people won’t even have a clue what that kind of strength looks like, clearly you’re one of them. The fact that you mentioned IQ proves my point. This is about EQ “emotional intelligence” not IQ 😂

[@JackDixy]

Now that's a soldier right there. She's 5X stronger than most of the human race. Keep fighting ya lil trooper

[@lindamonroe7724]

That's a bold statement.

[@MrSvenovitch]

how do you know it's not 7,5X?

[@tegannn9745]

It’s support which is more than I can say for all you above🤦‍♀️

[@redrose7340]

Agree

[@ezwayocho8296]

💞🙌💪

[@HighTen_Melanie]

This has to be the most intolerable and painful condition known to humankind. I can’t imagine how incredibly painful it must be to have almost entire body covered in painful and completely broken skin and blisters with the full knowledge that you will never recover. I really hope that they will find a cure in the near future to ease this terrible suffering. To have horrific never ending pain like this every single day of your life 24/7 and still be cheerful and positive shows the sheer strength of the human spirit in its highest regard. My greatest wishes go to all EB survivors and those who are researching to find a cure.

[@fallingnutria89fletcher79]

It's a hereditary condition. There is no cure. When two people with the same mutant gene have a child Theres more than a 50% chance they can be born with it. It affects more boys than girls

[@n_u001]

Its not. Check out the girl who is made of glass. Her bones are so fragile she cant walk or she will break apart, literally.

[@pinkmonkeybird2644]

M H thank you for providing amplifying information about collagen disorders. I can’t imagine a worse competition than whose disease is the most painful; that helps no one. I’m not going to give you platitudes about how brave you are or that you are a hero, that’s ridiculous. You’ve been dealt a rough genetic hand in life, but it’s all you’ve got, so you just go make the best of it, just like everyone else. I wish you a good journey through life.

[@justkittensbeingkittens5892]

M H omg are you doing ok now? I have Eds which is joint dislocation stuff. It honestly depends on the case for eds anyway, I just can’t do sports anymore ( I was a 4 sport athlete) but I’m not in a wheelchair or anything, as many people are, so I have it pretty good comparatively.

[@Piigbigwig]

It's really bad of you to say that "this is the most intolerable and painful condition known to human kind". Because that's *YOUR* opinion, not the human kinds opinion. It's not a competition of who has it the worst, some cannot walk, some has to be isolated to not die to normal bacteria etc. there's so many illnesses and conditions out there, so next time word yourself better with saying "this is the worst condition that *I* know" not that " *human kind knows* " because it's straight up insulting to other sick people

[@lilyblu4577]

This show makes me feel very selfish about the things I complain about on a daily basis.

[@lucakat9262]

Me too!😔

[@nicolascouceiro4427]

You shouldnt though, everyone has their kind of problems

[@jennycull1061]

Don't be. Pain is still pain

[@JF32304]

Yyyeeeppp

[@rileyandmegan2823]

I understand how you feel. We complain because we have a good life. We don’t know how she feels. She probably feels like she’s complaining and is ungrateful for something that’s happened to us Yknow what I mean? Someone’s always going to feel like someone’s life is worse than your own and yes maybe it is. But as long as you don’t stay to being someone who takes things for granted it’s just a nice learning experience :)

[@julesonthebeach777]

She reminds me of my son in a way. He has psoariatic arthritis covering 80%.of his body. He has thick, scaly, plaques, peeling, flaking, red, raw, cracked, bleeding, weeping blisters and scarred skin all over his body. He has a strength of character much like Sohana.

[@JF32304]

Look into chlorine dioxide/MMS. This is a virus, bacteria or a pathogen that's killing the skin... Of I had a son/daughter I wouldn't waste another second before trying this on them. I use it and just makes you feel better... Supercharges the immune system. If you want more info I can give you my email...

[@paramjeetthakkar7088]

He must be wonderful. God bless him and you❤️

[@albinopenguin6894]

@@JF32304 👁👄👁 do you think vaccines cause autism?

[@sadieladie9439]

I’ve had psoriasis since I was 7 and psoriatic arthritis since I was 15, and when mine got that bad, methotrexate helped, talk to his dermatologist about that or biologics. The steroid cream the prescribe is so expensive, but if you tell them you can’t afford it, mine was 167 for a tube, they’ll usually just give you some. The cream and ointments help a bit, but not nearly enough. The person who recommended something to “super charge their immune system” is wrong. Since psoriasis is an autoimmune disorder, giving too big of a boost to your immune system will flare symptoms. Once I was off the methotrexate (it’s not meant to be used long term, just to fix the severity) I found that what helped was aquafor on any patches, or where I tend to get them, using dove body wash, the deep moisture or sensitive skin one, baby oil, and cerave cream. I also found cool showers, or lukewarm at a max, helps. For the arthritis, yoga helped, but mines spinal, shoulder, and hip primarily, so it might not help as much. The biggest thing is stress reduction. Helping your son learn to recognize stress, and to cope. Stress is what caused my last three flare ups. Please message me or respond if you want any other advice, or someone to talk to. I’ve been dealing with this for twenty years, and have a lot of experience with this, and an ear to lend.

[@melaniehancock2210]

I have psoriasis too and eliminating gluten, dairy, and refined sugar helps TREMENDOUSLY!!

[@supernatural1233]

Skin conditions are so hard to have, I mean I had eczema for like a year and it was so painful and horrible to go through, and that was only on my hands and feet, she is so brave and strong to live with this. I really hope a cure can be found.

[@jcolinss]

Supernatural 123 do you still have eczema? If not how did u get rid of it. I suddenly got it out of nowhere, ive never had skin issues up until one morning when my hands started itching so bad.

[@lulu805]

jcolinss you cant really get rid of eczema, i’ve had it since i was born so 15 years now, you just have to find a good moisturiser and keep applying it to the area and don’t itch it because it will make it worst

[@supernatural1233]

jcolinss well I didn’t normally have eczema but my doctor said something triggered it last year when I went on holiday, i think it started from an insect bite or something and then turned into eczema, but yh the doctor said it was pompholyz eczema, I tried loads of creams and tablets the doctors gave, they seemed to work for a bit but then I would itch again, it was an endless cycle and kept going on for ages, then I saw online natural ways to get rid of it and the only thing that truly helped was changing my diet and drinking lots and lots of water, I started to eat lots of fruit and veg and cut out a lot of sweets and sugars, especially chocolate. Also I don’t know about other types of eczema’s but mine also spiked due to the heat, and as it started to get cooler it calmed down. I also tried to put an bottle filled with ice in my hands when ever I slept, which helped it a bit but It still itched a lot, so ended up washing my hand with freezing water which helped the most. My aunt also gave me a cream to use which was the only one that helped to get rid of the dryness, it’s called Daktacort, but everyone’s skin is different so something else might work for you. It still comes every now and then but i notice it quite fast and am able to control myself and not itch it too much as the itchiness goes after a day or two and it’s okay. Good luck, hope it gets better.

[@mamorudafirst]

Had eczema?

[@rainbowflowerpower4464]

I wasn’t born with asthma or eczema (they usually go hand in hand) but when I was around 18 Months old another child at my day care hadn’t been vaccinated against this dangerous virus because their mum didn’t believe in them so I caught the virus and it left permanent damage to my immune system, I now have atomic dermatitis and serve asthma, but it feels like I’ve just grown up with it, my dermatitis can become every painful and my skin sometimes doesn’t hold together so it looks like little scratches by it’s actually my skin tearing, I try to stay positive and live life to the fullest though, my friends and family have been a huge help.

[@SnowLilies]

"Mentally I'm probably the same" On the surface yes, but you have much more strength and resilience than your peers! So glad she's got close friends that have her back, it's very important to young girls

[@nemosangel]

I thought exactly the same!

[@uwu-uv4mg]

She's such a beautiful girl... I hope she lives a longer, much easier life.

[@devvlogid666]

I wish she can be curred and live normaly

[@sillysara657]

I feel for this girl. I have severe eczema and had to go to school all my life and hearing “what’s on your face?!” “Is that dirt on your face” “your face is weird,”. I know what it feels like to have open skin and have to suck up the pain because I can’t do much about it. I know what it feels like when you move your arms and legs, it hurts. This is gonna sound like rlly bad but I wouldn’t take showers too often because I had so many open cuts and water would make it hurt like hell. Cream just made it sting. I still have it to this day but luckily I get to have a needle stuck in me every other week, yay.

[@aytekineric8306]

Are y'all comparing eczema to having your skin fall off to reveal your flesh, including possibly your EYES if you're not careful and having an extremely limited life both in regards of activities that you are able to do and the fact you'd probably die young due to extremely high chances of fatal skin cancer? Nice.

[@TheRbruce55060]

omg poor little thing, so much to be dealing with at that age

[@briellahudson7087]

Mr Meow pretty sure shes not fully white, her mum looks asian and anyway whats race got to do with anything?

[@Isa-lo9iz]

@Mr Meow I hope you're joking

[@meriemabdelmoumene7430]

Mr Meow wtf is wrong with u who tf thinks or says that type of things you rasist shit

[@iulialungu6170]

@Mr Meow so you're not offendig black people but you are offending white ones and this is ok?

[@Isa-lo9iz]

@Mr Meow You're.. not joking?

[@kylasimpson2700]

God bless her she is a beautiful young woman....i pray a cure can be found x

[@yunisblu3412]

Sadly genetic disorders can't be cured just managed.

[@aproxamillionwasps474]

Fund raising is probably a lot more productive than prayers...

[@neffelibatta7658]

Unfortunatly there's no god to bless her!

[@khushboosagar6346]

Amen

[@savannahestrada2479]

Kyla Simpson their was a12 tear old that tried the bone marrow for his eb this year or last year and due to complications he didn’t make it. They are managing her eb as best they can and it’s either risk her life or help he manage it

[@NovaDoll]

Her parents have taken really good care of her. I've seen so many kids this this condition who do not have fingers and toes. I am so happy they take really good care of those parts for her!!! 💗💗💗

[@julszl]

I couldn’t imagine dealing with what she does, she’s such an angel.

[@trashcannottrashcant3887]

"And I'm like, no I'm not it's genetic" I love how cheerful and sassy she is😂

[@KYREEE]

There's a bone marrow transplant they can do, to reproduce the protein which causes hooks under the skin to hold it onto the body. I really hope she gets the treatment it might be painful and long but it's better then day in day out. Strong girl ❤

[@MAJE5TYY]

Do you really think if it was an option they wouldn't have done it?

[@manishapanda4125]

It does not work.my brother had it and he died at age of 2.He was Normal at 1st then it was painful to see a 6 months2 baby to bleed.I am glad he had not bear the pain,being selfish..I miss him

[@michellebailey6216]

@@MAJE5TYY she meant it in a nice way, don't be like that.

[@flamingogh_]

I wonder if they've tried it or if they've heard of it.

[@jessicakat2807]

There’s no cure for EB but they are researching ways to make it more easier to live with the condition.

[@TheHourofWitchery]

I cannot express how happy it makes me to see that she has such lovely friends for so long. You hear stories like this and people loose their friends all the time. These are genuine friends.

[@michellejackson2099]

How did they go through the toddler stage of her life?! I cannot imagine that phase at all

[@shannon4191]

All 3 of my kids have sever eczema that (seems) to get better with age. And those breakouts are full body, and just dealing with those for two weeks are tedious. I couldn’t imagine doing it for life. God bless her! She’s so strong

[@brooklynncrumet560]

My little sister has this, and she is 3 almost 4 she is like any other little girl, she just has to be super careful.

[@Tinyvalkyrie410]

As opposed to what, giving up on her?

[@cheycheyfriend247]

@@Tinyvalkyrie410 thats not what they mean

[@Tinyvalkyrie410]

@@cheycheyfriend247you are right, that’s not what they meant, but it is certainly what is implied. When you tell a disabled person that you wouldn’t be able to live that way, or when you tell a caretaker that they are so brave for taking care of an ill child, you are demeaning both the caretaker and the afflicted. When people say stuff like that, it sounds like “you are amazing for choosing to continue to attempt to function, when really your life has no value.” It’s a pretty shitty thing to say. Instead ask empathetic questions that don’t center you, but the person you are talking to.

[@morenag.7769]

“Stay humble.....or be humbled.” Whooooooo & I act like the biggest baby when it comes to a paper cut!!!! Smh....🤦🏻‍♀️ God Bless her. 🙏🏽❤️🙏🏽

[@MrSvenovitch]

Wouldn't you think your God has 'blessed' this unfortunate human quite enough already?

[@lucakat9262]

@@MrSvenovitch oh brother... do we really need to go there? I think NOT.

[@royce9296]

@@MrSvenovitch smh

[@Lucy-fn9rj]

everyone saying "she's so pretty!!!!!" like duh, she's got a lovely face, but i don't think beauty's her main concern here. fairly certain the constant pain is a bit more important to her than her good looks.

[@FlowerTower]

Ugly peoples stay mad when they see someone else being called beautiful.

[@arsonfly]

Let's all sit around thinking about the pain. Wtf 😂 She's going to be in pain. Why tf shouldn't people focus on a positive? I'd delete your comment and reflect. The more I read it the more insensitive it seems.

[@mackenziedavis725]

She’s so pretty and all the people that have butterfly skin are very unique and they deserve to be in this world, they are special and don’t have anyone judge you about having butterfly skin, you special and unique in your own way

[@sabhya3]

I so wish a normal life for her ...some miracle to help her do anything and everything she wishes for....

[@izzy__e_408]

These types of story’s makes me appreciate life so much. I can’t imagine her pain... I’m praying for the little girl

[@blackcorp0001]

She is truly a beautiful soul who feels so much more deeply than us the pain of life... She has my deepest respect and admiration, wishing her much happiness

[@agnessmulenga971]

please mam take that girl to Nigeria to prophet TB Joshua am telling will you God of TB Joshua heals completely

[@howtopaint3552]

as someone with a skin disease I am tearing up at hearing these stories because they feel so real

[@abida6534]

This series has made feel extreemly grateful for having no problems like this. Respect to all you people who are so mentally strong to get through it.

[@sharleecoulton2472]

Poor darling 😞😞 EB is an incredibly painful disease, and there’s no cure. Many sufferers don’t usually make it to old age and die young because of skin infections and skin cancer. An awful awful illness for anyone to go through. Being in constant pain 24/7, it has to be hell. Very brave girl for having to indure all of this.❤️❤️

[@hojo70]

Thanks for mentioning all that, I'm sure she'll be pleased to read

[@monsieurrodney621]

@sharlee Im sure your comment will provide comfort to her....smdh

[@mariaGreenDay4ever]

Hey.One kid got cured from that with some kind of transplant of the healthy skin cells

[@derekwhite1007]

@@monsieurrodney621 do you actually think she wouldn't know there is a good chance she could die. You must think she is stupid or something. I'm sure she knows a lot about her condition, and she seemed smart and probably would have looked into it deeper herself.

[@vrittidhanjani4356]

I hope that one day, someone genius will come along and make a cure for all the people in living differently series

[@aseeljawad1078]

Let's be realistic here,there aren't and probably won't be cures for genetic diseases.someone might figure out a way to lessen their pain but cure them completely? very unlikely

[@Tyreus1]

human are creating some of those diseases spreading chemicals and destroying nature. Maybe some of those will find a cure, but we need to change our behavior. Like for example, do what's right, not always what will quickly translate into easy money regardless of consequences. Being a consumer is a right to vote, a choice, let's make good choices

[@sherine9033]

This is a genetic disease, it's very unlikely to get a complete cure for such diseases. If we are able to make such a cure for every genetic diseases we might as well be able to create another human without sperm and ovum. But we all love and need optimism like this

[@yimyum8545]

CRISPR hopefully

[@hawkmoths]

@@aseeljawad1078 With the technology we have now, it may be curable before birth through gene editing. It's going to be a long while until we are at this stage, but we are able to do a lot of amazing things nowadays.

[@sofiaaimearaoz5925]

Oh my god...and I'm complaining about my little problems.. This makes me cry, we forget how much other people are really suffering on a daily basis..

[@emmalouise9776]

Poor thing, my heart aches for her. She is so beautiful and can't wait to see her thrive in life. She is so positive with the cards she has been dealt.

[@lubandlovu4686]

This just made me realise how much I take somethings for granted... You're brave I admire you

[@777violett]

She is so pretty! I wish there was a cure for this. It's so awful that there are genetic mutations like this in the world. Everyone deserves to be born healthy.

[@Christinaifbbpro]

my heart truly goes out to this girl. the look in her eyes doing her hair in the beginning broke my heart. i wish i could hug her

[@Jace3411]

Sohana if you see this.....KNOW that you ARE BEAUTIFUL

[@Maggzii]

Being resilient is an understatement! What a strong and amazing girl. Such a terrible condition, I feel so sad for her.

[@magdalenagudenus4666]

I just realized I have such a good life and I still complain about everything and I really need to be more grateful for my health

[@itanastanisic4876]

Me too

[@lucakat9262]

@K Dubbs Okay... um, whatever. Do you have any concrete proof of this or are you just making it up as you go along?

[@lucakat9262]

@K Dubbs so you are just going off of one person's beliefs and opinions? Oh, I see now. Thanks for enlightening me.😒

[@lucakat9262]

@K Dubbs whatever, I'm done talking to you.🤦‍♀️

[@lucakat9262]

@K Dubbs I didn't say I don't believe in reincarnation. I'm just not so sure that I believe we get to pick what each of our lives will be. I believe there is Karma, however, and that can either catch up to us in this life or the next. So I'm not so sure that we get to pick what happens to us in each incarnation.🤷‍♀️

[@reginaj-gx1yt]

She really is a very pretty young girl... its amazing to see the positivity in her... your in my prayers sweetie... what an amazing mom and family.. bless you all

[@0FlowerPop0]

Her bravery is astounding! She has the best spirit ever! My heart goes out to little Sohana she is beautiful!

[@mtmtmt26]

her resilience and positivity while suffering with such hardships is truly inspirational

[@rleeusaraga]

Sohana you are my super hero tuff strong . Many of us complaining yet achieves nothing. I pray for your health hopefully medical cure.

[@kibenthewolf]

That's heartwrenching 🙏she is incredibly strong for living with so much pain and still being able to smile and just have energy to do things at all. What a strong young woman.

[@amandalongman737]

What a sweet girl. I wish her nothing but happiness. I hope she finds what she needs to help her.

[@autumnjarvela9509]

She’s so strong. I’m around the same age as her and I can honestly say I wouldn’t be able to deal with that. I hope she lives a happy life ❤️

[@benharrison8604]

Wow, she's gorgeous. Like, model pretty. So sorry she has to go through this.

[@amandaelmore5762]

bless her and her mother and family. Her mother taking such good care of her instead of sending her off to someone else to take care of her as i see many mothers do at my work. True hero. Pure love.

[@DSN262]

I really feel for this girl. She has an amazing attitude towards life for someone with this condition! And deserves to be pain free

[@AllieFettig]

I love these videos about people suffering from strange and rare problems. It truly makes me appreciate life and appreciate the fact that I am not dealing with these horrific things.

[@user-hp2dy8so8g]

I love watching traffic accidents to appreciate that I can move my legs

[@suhairaboushoullieh685]

Check SBSK (special books by special kids). A lot of interesting people with overwhelming strength.

[@AllieFettig]

Where's Saffron?

[@lains1309]

i know you probably meant well with this comment but it just sounds bad...it comes across like you enjoy watching people suffer

[@horrormovielover1978]

That sounds like John Kramer’s philosophy 😂

[@malibubarbi01]

Oh my goodness. What a beautiful, sweet girl. No one should have to go through this. I’ve had my share of painful skin issues and I can’t imagine them being lifelong. I hope they will find a cure for EB soon so she won’t need to worry about her skin for at least some time in her life. She’s already so strong and I admire her for not allowing this to defeat her, although I’m sure it must feel that way at times.

[@imaginator13]

She's such a strong grl i have ever seen in my life, she's so little but stil have amazing ability to fight with her condition. For me she is a true warrior . Sending prayers and happiness in your ways little Angel 😇

[@dame5079]

Breaks my heart to see this girl going through this. Every time I burn myself or cut my self or have some problem I always tell myself that there’s someone out there going through worse. To many good people put on this Earth to suffer😢💔

[@ola6042]

Inside shes like any other teenage girl, happy smiling always laughing, on the outside she has to endure pain 24/7, and yet she still has the ability to laugh and smile through it all, what a brave child, if only they find a cure faster.

[@valeriesamon5351]

she’s absolutely stunning and she lives her life beautifully and with the greatest resilience. God bless her and i wish the best for her and her family.

[@zarax8494]

She’s gorgeous both inside and out❤️

[@diandraleahhyman1371]

Her voice is super soothing and she’s so pretty!!

[@katrini2169]

And ppl are complaining about boldly pimples and chapped lips🙄

[@cclwchtr9046]

and they have every right to!

[@Oh.itsNia]

Yep I have Cerebral Palsy see how every kid feels

[@AC-pu2mr]

Katrin Ivanova as though you’ve never complained. Save the eye roll for yourself, hypocrite 😂

[@jcolinss]

Pain and discomfort is still pain and discomfort, no matter how you try to diminish it. 😂

[@rlee3538]

@@cclwchtr9046 as well they should, that shit is uncomfortable

[@annal638]

Sohana, Your attitude is incredible and you are such a beautiful soul. I am so happy you have amazing friends and family around you

[@catc6050]

The resilience this young lady has is inspirational. She just tries to live as normally as possible and doesn't let her condition bring her down. She is extremely strong and brave and I admire her

[@AmiraSmyrna]

We all have our fair share of burdens in life to carry, but my heart goes out to this poor young lady. She truly is a massive inspiration. Makes you greatful for what you have in life, and for the simple things.

[@fearnes.5272]

Omg...she’s so bright and cheerful. I think her mom and friends/family support plays a big part of this, from the way she talk when she tell her story, you know that she’s loved and she feels loved and she embrace the conditions and still get to enjoy her life as much as she could. I hope their charity would be able to help improve the living condition of people who has EB.

[@ingridkirkholt8321]

She is a beautiful and brave young lady. I love her attitude, it warms my heart how positive she is. ❤

[@sabrinagordon6458]

When I watch these stuff ...tears keep falling down my cheek bones...sighs it's so sad

[@ACoolMom]

She’s amazing! Her resilience is just wowing. She’s so positive.

[@amandathehuskyowner3024]

Ugh this makes me so sad I just want to gently hug her.

[@lucy-lou2098]

Bless her, she is so beautiful

[@karencampbell2410]

OMG I feel bad for this woman living with this condition. What a brave beautiful soul. I feel as though some people suffer so much and others complain about nothing. All the best to you ❤️❤️

[@Jesussavedme]

I can see her bravery 😢 she's trying to stay strong I can't imagine dealing with this on a daily basis stay sweet and God bless you 💜💚💛

[@pinkcat9879]

I admire this young lady. I'm still suffering in an eczema for the first time. On the first day it's very itchy and we don't know what it was and I'm freaking out because my skin is getting rough and as the day passes i start to wear jackets its been that for 2 weeks and I'm crying because i can't do anything about it but i always set in my mind that out there in the world has a condition much severe than you but your mind sometimes mess with you and think but seeing this video makes me cry and appreciate things more in my lifein my condition there's a lot that i can't eat or do like wearing short dress but still complain but in the other hand this young lady show me, to all of us that never be discourage and there's always a beauty in everything and kudos for her because she can smile i know my condition is common but for me i think its worst and this lady managed to look in her condition as if its not there 👏👏 you're an inspiration to all of us and a reminder that God has a plan on all of us just trust Him Just sharing my experience. I know my eczema thing is not that worst on what her condition im pointing out that in my condition im complaining what more she is so proud of you girl. May God heal you and Bless you a beautiful life and have a family on your own Love from the Philippines😘😘

[@RhinoaLunar]

If you can be this amazing and resilient, it makes complaining about my psoriasis so trivial. It can hurt and I often wake on bloody pillows and under fingernails. It spreads with scratching. It's genetic. That is where the similarities end. I'm going to try and be more like you.

[@MartinsGarage97]

Celestial Murmurs ASMR I was just thinking that about my eczema. Mine gets bad at times where I can't use my hands because they're in bits with little or no skin left on them, but I go to the doctor and get on steroids and it clears up. Yes it comes back as soon as I stop, but my hands have healed. She has no relief, I can't imagine.

[@Cavani55]

Sad life

[@MVPA-io5ee]

Whether its EB or psoriasis...both of you are amazing..🤗 don't feel bad about confessing your feeling... sometimes we as humans need outlet in a positive way to feel better 😉

[@RhinoaLunar]

@@MVPA-io5ee thank you. We all have our own battles.

[@clarinetstar14]

Just because Sohanas condition has worse effect than psoriasis and eczema (which I have been in and out of hospital with) doesnt mean we dont suffer and have no reason to complain. It's not easy for us either x

[@vijivg86]

Her mom is an angel, i wonder how she wud have struggled to bring this beautiful fragile butterfly all this way .. full of confidence n smiles n positivity... 💙 💗 I pray u stay happy always.

[@amandaenriquezstudent8854]

she has been added to the list of people i compare myself to wheni think my life kinda sucks.

[@Venus.Y]

Lol

[@jasonstarrising]

LoL

[@Senura101]

She looks pretty and nice ☺️ May the triple gem bless you ❤️

[@glitteryworld3618]

She’s so beautiful,and btw she have amazing friends at least

[@brennapetersen8522]

She is beautiful. Her voice is so comforting. Keep it up angel. I am so sorry that you're in pain.

[@q.a.2875]

I admire everything her mom says about her too ! And I admire her mom and friends too ... and also the kind words in the comments ... God bless

[@lucillehaveman2306]

This made me cry. I can’t even imagine! 💕

[@meenasabbay4648]

Oml God bless her 🌟✨

[@kamrenplays7549]

She is so so brave, beautiful, and kind. Sending her much love♥️

[@syafiranasution6996]

She's so amazing it made me cry. Never been so motivated before, goodness she's so inspirational.

[@kayliesmammie89]

What a strong beautiful girl and family you're amazing thank you for sharing ❤

[@islafletcher1877]

Ohh that looks painful! I hope you feel better and you’ve got heaps of people praying for you! Good luck and keep fighting!

[@truthchanel3105]

The strength of a mother never sees us to amaze me what a wonderful woman she is I wish that family the best

[@PoonDestruction]

wow, sohana is truly beautiful and a warrior through and through.

[@kookie2946]

She is beautiful! No one should tell her different

[@zodiacsign5848]

She resembles a lot with Gigi hadid🤔🤔

[@maryamboujarfaoui7734]

I THOUGHT THE SAMEEEEE

[@hanaeattallihi3757]

Yeah true

[@Vijayalakshmi-rp3yo]

Yeah

[@readstoomuch2070]

@Random Stuff she's got similar facial structure to her. Also please tell your sister she is such an inspiration for keeping such a wonderful attitude about all this. She has a strong spirit!

[@via5694]

Zodiac Sign omg she does

[@TheRealOBZRV]

I wish her well. My heart goes out her and her fam. She's has a strong spirit.

[@gemradiant6350]

Sohana is an incredibly strong, sweet, and beautiful girl. God bless her and her family with continued strength.

[@debibarrington8348]

Mother and daughter are so beautiful God bless the two

[@trophyb.3559]

She is extremely beautiful! Pray to the Lord for a cure for this girl!

[@mgbechikwuru]

How beautiful is this girl, inside and out. She is strength and dignity signified. Her mom is great and it seems her beautiful spirit draws beautiful people to her 💗

[@krishanmalinga6504]

For the record she is the most braver person I've seen..no matter how much pain she's going through she still manage to smile..god bless you..❤❤❤

[@DarkArtistry143]

can't imagine her hardship and her pain. Bless you and your family

[@ilovekat8407]

16 or years suffering, she was so strong to endure those pain.❤👏

[@jemyimxx]

Huh!? She died??

[@triggerfish9967]

No one deserves to live like this, especially a child. Count your blessings & dont take them for granted. God bless her.

[@kaceyweihing5392]

You are such a brave and strong girl! I loved when she said her body was different, but she thinks the same as everyone else. I can assure you, this little girl has more mental strength than most! I pray they find a cure.