in general my entire body feels very
sore normally there's a sort of constant
itch everywhere
often the itch can lead to you rubbing
it and then he asked you wrong go skin
off and not of the crazy
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if quite normal to the breakup was quite
enough a lot of my Paris I believe did a
lot overnight just from sleeping I don't
really have any hair around here cuz
it's gonna come off quite a lot he says
always something nothing obviously I
should go around my daily life thinking
that hurts but I don't really remember a
time when I was actually nothing
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a phenomenal Isis release at existing
condition that causes the skin to lose
its delue that's the hold on
there's on me so is friction lots of the
scared of all different parts of the
body he's eating like eyes and your
mouth can come off her usually I have
recessive dystrophic AP recessive
dystrophic affects the eyes and the
mouth and throat so this means that and
you've got eyes ops tend to mix up my
eye doesn't stick to my eyelid and then
causes an abrasion she is incredibly
fragile and can get damaged very easily
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so it takes about 1/2 hours to dry
things in the morning and then to and
living I think it takes longer anything
for her
I've been walking around here and my
blisters on my feet I'm only woke up
while doing my job things like my arms
and stuff about 6:00
yeah mine started about ha plus 6
sometimes it slips we're always late for
school
there hasn't been a day since sauna was
born that we haven't had to break a
blister and I have to say that when I
open up the packet and hear the crinkle
I think this means another blister to
prick but I can't imagine what that's
like for Sahana who hears that the news
that it needles coming her way and
there's nothing she's gonna be able to
do to really escape having it done yes
no prison dresses is one of the most
painful part because the dressing
process my bloodless is to never eat
let's hope there's like very sick it's a
very difficult job pregnant not done a
lot of times I'm starving for them
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Ahana was born with EB we didn't note
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 that they put on it there
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 so when I
got sighs something suppose goes ask
lashings and like everyone who does a
lot when we're traveling when you go see
security won't someone says I can't go
on the plane because I'm contagious we
know it's traumatic
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it's great funny in a way it's just how
I deal with the problem are you seen a
funny side of it Sahara 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 called you I kind of wish I
could but he he never really liked to
have this kind of limit normally when I
go out my friends I do you know things
when I spend time with friends we can
just do anything that just not basically
I've known Sahana for 11 years I think
since here one before I knew Sahana
I obviously could tell she had a baby I
mean it's yeah it's not accurate 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 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
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in the space of time that we've been
fundraising we've managed to raise over
five million pounds for EB Research
which is good but quite frankly it's not
enough I don't think just because our
treatment is make sure it doesn't mean
it shouldn't be stuff proceeded because
it can improve the lives of people with
the condition of so much EB causes
painful blisters that need to be pricked
with a needle please play it play evey
pot for Curie beam to make the blister
stop I think you ever really get
complete investor pain
this is another evening experience
something every day we're gonna hurt
it's just it's not really surprising for
me
I think obviously cuz physically I'm
quite different to most people but my
mental you know probably the same I
think I have my Sahana z' humour
resilience ability to just get on with
life despite everything that's thrown
away 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
you
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