Me & My Butterfly Skin | Living Differently
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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.


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