SOHANA COLLINS: 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 creates more wounds. SOHANA COLLINS: It’s quite normal to just 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. SOHANA COLLINS: Normally there is always something hurting. Obviously I don’t go around my daily life thinking, ‘That hurts’ but I don’t really remember a time when there was actually nothing hurting. SOHANA COLLINS: Epidermolysis Bullosa is a skin condition that sort of, causes skin to lose it’s glue that holds it on. So that means with friction, lots of skin in all different parts of the body including like eyes and your mouth can come off very easily. SOHANA COLLINS: I have recessive dystrophic EB. Recessive dystrophic affects the eyes and the mouth and throat. So this means that I need to put eye drops in to make sure that my eye doesn’t stick to my eye lid and then cause an abrasion. SHARMILA COLLINS: She is incredibly fragile and can get damaged very easily. SOHANA COLLINS: 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 I’m walking around. So there are more blisters on my feet. I normally wake up while Mum is doing my dressings like my arms and stuff. SOHANA COLLINS: At what time do you wake up? SHARMILA COLLINS: About six.
SOHANA COLLINS: Yeah, about six o’clock. SHARMILA COLLINS: And sometime it slips. We are always late for school. SHARMILA COLLINS: There hasn’t been a day since Sohana was born that we haven’t had to prick a blister. And I have to say when I open up a packet and hear the crinkle I think, ‘Oh this means another blister to prick.’ But I can’t imagine what’s that like for Sohana who knows that a needle is coming her way and there is nothing she is going to be able to do to really escape having it done. SOHANA COLLINS: Yeah, so pricking blisters is one of the most painful parts of the dressing process; like blood blisters are very difficult pricking them because you have to do it lots of times so that is painful. SHARMILA COLLINS: 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 that they 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. SHARMILA COLLINS: We were terrified to pick her up and do anything with her. SOHANA COLLINS: So whenever I go outside, sometimes people still ask questions and everyone stares a lot. When we were traveling and we got to security, once someone said that I can’t go the plane because I am contagious. I am like, ‘No, I am not. It’s genetic.’ SOHANA COLLINS: It’s quite funny, in a way, just how I deal with the problem. I just see the funny side of it. SHARMILA COLLINS: Sohana was never able to ride a bike; she can’t really do sport. She has never really had the pleasure of climbing a tree or even running can be quite painful. She will try and run but of course we didn’t want her to fall over. SOHANA COLLINS: Everything I can’t do, I kind of wish I could because obviously no one likes to have those kind of limits. SOHANA COLLINS: 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 is just not sport basically. ANNIKA DE LATHAUWER: I have known Sohana for 11 years, I think, since year one. ANNIKA DE LATHAUWER: Before I knew Sohana, I obviously could tell she had EB. SOHANA COLLINS: Yeah, it’s a secret.
ANNIKA DE LATHAUWER: 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 are 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. SHARMILA COLLINS: In the space of time that we have been fundraising, we have managed to raise over five million pounds for EB research – which is good but quite frankly it’s not enough. SOHANA COLLINS: I think just because a treatment is not a cure, it doesn’t mean it should not be pursued because it can improve the lives of people with the condition so much. SOHANA COLLINS: I don’t think you ever really get completely used to pain. So for example even if you experience something every day, it’s still going to hurt. But it’s just, it’s not really surprising for me. I think obviously because physically I’m quite different to most people but mentally, I am probably the same. SHARMILA COLLINS: I think I admire Sohana’s humour, resilience, ability to just get on with life despite everything that is 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.