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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.. , Epidermises Bulls 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 strophic EB , Recessive strophic affects the eyes and the mouth and the throat , So this means that I need to put eye drops in to make sure , that my eye dozen'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'vie 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:W , Sometimes it slips , We're always late for school , There Hans't been a day since Sana 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 Sana, , 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 , Sana was born with EB , We did'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 , Sana 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 did'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'vie known Sana for W years, I think, , since year one. Yeah! , Before I knew Sana, , 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 wan'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. Aw! , 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'vie 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 dozen't mean it should'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 Sana'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.
