Me & My Butterfly Skin | Living Differently

Me & My Butterfly Skin | Living Differently


In general,
my entire body feels very sore. Normally, there is a sort of
constant itch everywhere. Often the itch can lead to you
rubbing it, and then you actually rub your skin off and that
obviously creates more wounds. It’s quite normal to wake up with
quite a lot of… ..blood on my pillow. I bleed a lot overnight, just from sleeping. I don’t really have any hair around
here because the skin comes
off quite a lot. Oh, no, that looks terrible,
I’ll just try… Um… Normally, there’s always
something hurting. Obviously ,I don’t sort of go around
my daily life thinking, “that hurts” but I don’t really
remember a time when there was actually nothing.
I don’t… Epidermolysis Bullosa
is a skin condition that… ..sort of causes the skin to lose its glue that sort of holds it on,
so that means that with friction, lots of the skin on all different
parts of the body, including, like, eyes and your mouth,
can come off very easily. I have recessive atrophic EB. Recessive atrophic affects the
eyes and the mouth and the throat. So this means that I need to put
eyedrops in to make sure that my eye doesn’t stick to my
eyelid and then cause an abrasion. She is incredibly fragile. And can get damaged very easily. Yeah. So it takes about one and a half
hours to do dressings in the morning and then two in the evening. I think it takes longer in the
evening because as I’ve been walking around,
there are more blisters on my feet. I normally wake up while Mum’s
doing my dressings, like, my arms and stuff. What time do we wake up? About six. Yeah, about six. I think we started about 6:30. Sometimes it slips. We’re always late for school. There hasn’t been a day since Sohana
was born that we haven’t had to prick a
blister. And I have to say that when I open
up the packet and hear the crinkle, I think, “Oh, this means another
blister to prick”, but I can’t imagine what
that’s like for Sohana, who hears that and knows that a
needle’s coming her way and there’s nothing she’s going to
be able to do to really escape having it done. Yeah, so pricking blisters is one of
the most painful parts of the dressings process. Like, blood blisters because they’re
very just…sort of very thick, so it’s very difficult
because you have to prick them lots and lots of times. So that’s painful. Sohana was born with EB. We didn’t know it when she was born
because she was completely normal looking, apart from a very
small patch on her neck. But by the next morning, the skin
had been rubbed off her ankles and her feet from the plastic tags
they had put on at birth. And they gave us a very special
pillow on discharge at the hospital, and she stayed on that pillow pretty
much for six months! We were terrified to pick her up and
do anything with her. When I go outside, sometimes people
ask questions and, like, everyone stares a lot. When we’re travelling, and
we go through security, once someone said that I can’t go on
a plane because I’m contagious, and I was like,
“No, I’m not, it’s genetic.” THEY CHAT It’s quite funny in a way, it’s just
how I deal with the problem – I just see the funny side of it. Sohana was never
able to ride a bike, she can’t really do sport. She’s never really had the pleasure
of climbing a tree, or…even running can be quite
painful. She’ll try and run, but of course we
didn’t want her to fall over. Everything I can’t do, I kind of
wish I could because obviously, no one really likes to
have loads of kind of limits. Hi! Hi! How are you?
I’m good, how are you? Normally when
I go out with my friends, I just do normal things. When I spend time with friends,
we can just do anything that… Just not sport, basically. That was a lot of fun, actually.
It was. And we did get some work done.
Oh, sorry. Not really, but you know. Well, actually, we did. I did, I
don’t know what you were doing! No, I was trying to do that maths
paper. Oh, yeah. And then we drew on it. Instead. I’ve known Sohana for 11 years,
I think, since year one. Yeah! Before I knew Sohana, I obviously could tell she had EB! I mean, it’s…yeah. It’s a secret! But I don’t think… Because we were so young, I
think we just grew up knowing this and it wasn’t
something that bothered us. Yeah. I think when you’re older and
you see someone, it might be a bit more shocking
but to us it was just one of our friends and that was
just… ..who she was, really. Aww! I don’t remember what I said
but it was so fun! No, it was… You were pretending… THEY LAUGH In the space of time that we’ve
been fundraising, we managed to raise
over £5 million for EB research. Which is good but quite
frankly, it’s not enough. Just because a treatment is no cure, it doesn’t mean it shouldn’t be sort
of pursued because it can improve the lives of
people with the condition so much. EB causes painful blisters that need
to be pricked with a needle. Please play EB Pop for Cure EB,
to make the blisters stop. THEY LAUGH
Woo! Oh, my God! I don’t think you ever really get
completely used to…pain. Even if you experience something
every day, it’s still going to hurt. It’s just,
it’s not really surprising for me. I think, obviously because I’m
physically quite different to most people but, like,
mentally, I’m probably the same. I think I admire Sohana’s humour, resilience, ability to just get on with life despite everything
that’s thrown her way. She has an amazing ability to find
enjoyment in all the things she can do without focusing too much
on what she can’t do.

100 Comments

  • ... says:

    This girl is so strong but people need to stop comparing their pain to another person's.
    Just because someone is hurting more than another person doesn't mean the pain stops for the person who is hurting less.

  • The adventures of Rachel and Ava says:

    Wow poor babe thatd be such an awful way to live especially for a child ! She’s such a tough precious little one . What a sweetheart! That looks so painful 😖 she’s a beautiful girl . And that mom too is so strong ! I couldn’t imagine how she feels having to see her child suffer and still try to stay positive and strong for her child .

  • Yousuf The beast says:

    she's so pretty.i just felt in love with her.

  • DapperJazz says:

    But—

    But that’s not fair. Why am I not her friend that she’s had for 11 years, I’d adore being her best friend, she precious and sweet and I love her already—

  • Jennifer Equestrian Stories says:

    Is this like the glmm? There is one called butterfly skin like hers?
    And everything in this is the exact same she wears blotches and everything else

  • shayna lobind says:

    This makes je sad I really want to help her but Sohana u r a really brave girl

  • Afsanara Bindu says:

    Stay brave ok dear

  • Divya Jyoti says:

    Who ever here is normal and always complaining about their looks…just see how much better life you have got….and lots of love and prayers for this strong soul..

  • Maria mhike says:

    Stay strong.You'll be treated

  • Umet Faisal says:

    She is really gorgeous … God bless you dear

  • Brian Lewis says:

    Oh god imagine being itchy! How do you scratch that itch???

  • Diana Athokpam says:

    💖💖🙏

  • Diana Athokpam says:

    she is so preety god bless her 💖

  • bobo bear says:

    6:48 wow their hair is so thick and beautiful 😍😍😍😍

  • Eesha verma says:

    She's gorgeous! May god bless her beautiful soul💖

  • Charlotte bruck says:

    Plz like to pray to God

  • tiffy tiffy says:

    Stay strong and brave

  • Sofia Aime Araoz says:

    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..

  • Poopy Diaper says:

    I’m sounding rude but the sounds like a hot mess having to wake up to blood and gloves and skin everywhere and hurting and doing her hair 🤢

  • Arian and Star says:

    Brave girl😄😄😄👏👏👏

  • Sahithya Bhat says:

    Today I'm gonna pray for u dear!!🙏😭
    God bless u…🙏and ur strong and will power will keep u😊👸🧚‍♀️🎅👰👍..be strong 💪never give up🤞

  • Avantika Patki says:

    I want to slap my self after watching this video because I hate sports and in the other hand they dont get to play even………… May God give her all what she needs…🙏🙏✝️🕉🌍🌍

  • November_rain 0211 says:

    God bless you child…love you stay stronger

  • Mani S says:

    Very brave girl 👧 👏👏👏👏👏👏👏👍👍👍👍👍

  • Lavendoth says:

    I hope she finds a way to not be in pain

  • Luthfiii Romjon says:

    She's just amazing amazing amazing brave young girl..😍😘 Stay focus dear

  • Gagandeep Singh says:

    Where r u now

  • Blaze_Hgt says:

    Bro who disliked this -pulls knife

  • Gabriela Garza says:

    OMG that's sad

  • Alexandra says:

    I'm fuming over the fact that someone really assumed she is infectious and tried to tell her she can't go on a plane. People are so ignorant. As if someone with a child with some flesh destroying infectious disease is going to be on a plane like it's NBD and not in a hospital fighting for their child's life. People with flesh eating bacteria for example are not strolling around in the airport boarding planes with their family… They are actively DYING in hospitals struggling to stay alive and keep limbs. Tf!? I imagine it was a 40 something with a "can I speak to the manager" haircut. Mind your own f***ing business people.

  • wengthoughts says:

    So happy that she has friends that accepts her because it helps her feel good and her positve attitude does help a lot. Keep it up Sohana. I hope they can find a cure to ur disease.

  • jasmine amer says:

    poor girl

  • haley vlogs says:

    She’s beautiful 😭❤️

  • haley vlogs says:

    I wish you the best life girl your gorgeous and so brave never give in or never loose your faith ❤️

  • Sara Brower says:

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

  • ksunshine2015 says:

    She should have fly kicked them in there face

  • RosyLifeLya says:

    who has eczema?
    I have and it's so hurt but I guess that is really super hurt, stay strong dear… But I tried to use Cetaphil for my body wash and Cetaphil Cream for my skin… And it's a lot of better… Like if u have ^_^

  • Daniela McKee says:

    No darling. You are not like the other people. You are much more resilient, strong, incredible beautiful and intelligent, and your capacity to endure pain is much stronger than anyone else. Your ability to deal with this condition by focusing on the things you can do and on the good days you have with friends and family doesn't put you in the normal category. You are way above the average person. You are going to great things in life. You are changing lives as we watch you videos. Thank you for your courage to choose to live another and another and another day knowing that it hurts but you can make the difference.

  • noor sabahat says:

    She is beautiful and really lovely ♥️

  • Deku My hero academia says:

    Dang you pull of a ponytail better than I can

  • Sana Haroon says:

    God bless you child. You are really brave. Lots of love

  • Gabbz Abbz says:

    @bbcthree imagine not giving the link to donate to her parents funding you tight arses

  • LpsTurtle brannon says:

    i think your butfil

  • Sony m says:

    I had a skin problem for one year i can feel her pain how she is going through it…..bathing is more painful😭😭😭😭😭😭😭😭😭😭😭😭😭very strong girl she is…keep it up dear😘

  • Daisy A says:

    God bless this girl this must be so hard to live with 🙁

  • mgbechikwuru says:

    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 💗

  • Noor shane says:

    Oh Allah pls heal her,Just keep on praying sweetheart nothing is imposible to god.Praying for ur health.

  • mulberrie's Channel says:

    Ok there's only butterfly skin on my hands theres itch everywhere on my hands and my hands are like a zombies hand

  • Tinker bell Rocks says:

    Wow what an amazing young lady x I pray that our Heavenly Father blesses you heals you and keeps you always xx

  • Rheinmetall says:

    Life is so cruel.

  • s_lx says:

    Well, if butterfly’s can live with it, so can she!

  • Ashley Quiroz says:

    Aww she’s so beautiful.

  • Justin Bellio says:

    You know your quality of life is pretty terrible when you're a teenager in your permanently prescribe to morphine

  • BO LMA says:

    I really feel for this girl. I can't say I've had this to the same level but I've definitely had my fair share of stressful itchy skin conditions and sensory issues. I wish her all the best, and hope she knows she's not alone ❤

  • Bianca Gaban says:

    She's really pretty tho… Like models nowdays.. unique facial features that are refreshing and also with good symetry , toussled hair, and the eyelashes really pop, which completes everything. Really just a sweet beautiful young lady.

  • don't matter says:

    Poor girl

  • S. E. Z says:

    People who want to know how to help, what you can do is contact your legislators about stopping anti-opioid legislation. The powers that be want opioids to be unavailable to everybody but cancer patients (bc cancer lobby groups successfully got themselves exempted), including severe genetic disorders and children. I've even seen surgical patients denied meds. This MUST stop. How sick do you have to be to keep a child with a condition like this or with 3rd degree burns or whatever from getting pain meds? I see in the video that she has morphine, but trust me that prescription was not easy to obtain or fill. Pharmacies constantly try to get out of filling opioid scrips bc of DEA scrutiny and doctors don't want to deal with it. She will have a lifetime of struggle to keep these meds.

    I have a rare, severe genetic disorder as well and I have to fight like crazy to get and keep my meds even though they don't get me high, aren't valuable on the street, even though I'm drug tested to make sure I'm taking them and not selling them, etc. Still pharmacies, insurance, doctors, etc fight me about it regularly and I constantly have to advocate for myself. Last night I had to go to the ER because my normal clinic did not have anyone there to fill my meds on time (only certain people can prescribe them legally, I take Suboxone which is not like other meds in that the gov't limits the number of providers who can prescribe it and how many patients they can have, only so many people in the USA at a time are allowed to have a prescription) and there are rules about patients not being able to call in about opioid prescriptions and so on. Even the ER was afraid to write me a temporary prescription when the night nurse from my clinic sent me there, and said all they could do was have me take FOUR DAYS WORTH ON THE SPOT ALL AT ONCE and hope it kept me tided over for 4 days til my doctor returns. They were that scared to write a traceable prescription. Pharmacies are afraid to fill my prescription, won't answer on the phone about whether they stock the med / are willing to fill; I have to travel in person to find out even though I'm disabled. They pretend to "lose" my prescription so I get a receipt every time I turn one in now. Sometimes pharmacists try to talk me out of taking my meds and tell me that my doctor is harming me by prescribing this, even though they don't even know what condition I have. I just reported someone to the state pharmacy board for advising me to attempt to secretly stop taking my meds outside of my doctor's supervision (ie deceive my doctor about whether I am taking them).

  • Starr Osborne says:

    Omg how she must suffer I’ve had skin conditions all my life but nothing compared to this young girl my heart bleeds for her

  • Laini Richardson says:

    So sad sweet girl God bless u

  • king kong kahn says:

    😇

  • israr asghar says:

    she is so brave and so pretty

  • Mr. MoUsEY 5624 says:

    Poor girl that’s terrible I feel bad she’s a young girl she doesn’t have to deal with this I love her art work

  • Makhni G says:

    BC do whatever the f*** u wanna do…. U can't escape!

  • Rivka Leah Revah says:

    I wotst on yoowtyoowb sumwun hoow went on a truyerl for eb and it got muts beter. Pleeyz lorc it up

  • היילי מור says:

    U r amazing and very beautiful

  • Eman ASMR says:

    Wow she is strong!

  • Alvinho Ken says:

    So adorable I pray she gets cured

  • K Dubbs says:

    Shes beautiful! Inside and out

  • Yggdrasill4 says:

    Damn, that is just… tough
    She wont be able to do a massive amount of things people take for granted, people do for pleasure.

  • Biggie Smalls says:

    Oh wow. 😢

  • Vanessa Penaluna says:

    STRONG, AMAZING, WARRIOR…

  • Jennifer Woodhead says:

    So glad she has such a good friends

  • TheodoreRazVEVO says:

    She is so well spoken❤️

  • Aygoo Booyaa says:

    Aww Sohana you’re beautiful 🙂 wishing you well

  • Amaya Liyanage says:

    May God heal her❤

  • Lauren Sharp says:

    She's very beautiful

  • a spice of avocado says:

    She is soooooooo pretty

  • Matthew Alexander says:

  • Douglas Dishroon says:

    Beautiful young lady, you are more mentally strong than most humans with bad acne. I am so in awe of your strength and your families support and love. I wish you the best pretty young lady.

  • You on Kazoo and morgz are satanic. says:

    She may have butterfly skin, but that didn't stop her emerging from the chrysalis like a hero.

  • Phonlynn Ireland says:

    Amazing how many people accedently click the dislike button

  • eteppo says:

    We need to learn how to do safe genetic engineering for diseases like this asap. It's the ultimate, general solution.

  • Life With Ocean says:

    I'm not crying your crying. This is so sad even though she isnt, I just feel bad that we complain about random little shit and shes living life like the way she is

  • kevin g says:

    What a brave girl ,damn that made a tough guy tear up , that girl is a warrior

  • cruzan mongoose says:

    If you think you're having a bad day watch tough girl going through a nightmare

  • FadiCrafter says:

    Jeez I thought I had bad skin because of my eczema

  • Cheryl Ametewee says:

    she's gorgeous.

  • Chandu Sai says:

    Hope doctors will find a way to this condition…
    Hope she will get a long happy Future

  • sajid sayyed says:

    Allah ki panaah lo insha Allah, Allah will guide you

  • Laura Beldin says:

    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 💜💚💛

  • Сан Райс says:

    А что целых перчаток не было?

  • 9th Mistress says:

    Such a brave girl… Bless you~
    .
    And here I complaining a lot after I got accident with skin injuries that will heal completely in a one or two week T.T

  • Just some human on YouTube. says:

    She reminds me of my baby brother.

  • BR Y says:

    I'm sorry you had to live through this disease where your parents were afraid to hug you for fear your skin would fall off. The constant morning and night wraps to keep your skin safe and with all that, still painful blisters. I'm happy that you are so positive about the condition. The bible give positive and satisfying answers to help persons understand that one day sickness will be a thing of the past, Isaiah 33:24 and all will live happy and healthy lives. Revelation 21:3-5 see JW.ORG

  • Nupur Verma says:

    And we complain of having a pimple on our skin. Thanking god for what I have and I am so grateful for it.

  • kamaboko1 says:

    Speechless.

  • Farzana Hasan says:

    I hope they find a cure for sahana..😥😥

  • BlueHB says:

    Hay my name is Annika and her friends name is Annika

    Funny and cool

  • Slip Stream132 says:

    This is why god don’t exist and religion is bullshit.

  • Shinners says:

    What a wonderful girl. Her resilience is incredible. Invest your donations in a different country. Focus on rewarding someone who comes up with a treatment. The UK is not the place anymore with brexit sadly. R&D wont exist

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