00:00 My skin is as fragile as a butterfly's wings.
00:03 Ow, ow, ow.
00:04 I was born with a rare genetic skin condition.
00:07 We stoose, we'll never stop.
00:09 I can't escape the pain, and there is no cure.
00:12 It's frustrating to, like, see your body just getting...
00:28 This is much better than yesterday.
00:31 Yeah, maybe a little bit.
00:33 Epidermolysis bullosa is a rare genetic skin condition
00:37 that causes the skin to be very fragile
00:40 and tear at the slightest touch,
00:42 which means that I get wounds and blisters easily on my body.
00:47 I have the most severe type of AV.
00:51 There is no cure.
00:52 The only thing you can do for now is pain management
00:54 and get the wounds to heal.
00:57 Try to not get new wounds.
00:59 I need to change my bandages every day
01:01 because I have to look if there's any blisters.
01:04 It takes about four hours every day.
01:07 It's a lot of different bandages.
01:12 The first time you're helping someone out,
01:14 you use a lot of extra time
01:16 because you don't know what to do.
01:19 After some years, you do it automatically.
01:22 Ow, ow, OK.
01:25 It's often frustrating to live with EB
01:28 because it's painful and it's very time-consuming
01:32 and I can't take any break from EB.
01:36 It's frustrating to, like, see your body just getting...
01:41 Um...
01:42 My esophagus has also grown together,
01:53 so it's difficult to eat and drink
01:57 and also to take medication.
01:59 So all medication I take has to be fluid or...
02:05 Crushed.
02:06 Crushed like this.
02:07 I knew my whole life that I have a very bad prognosis.
02:13 When I was born, I had two blisters on my back
02:17 and one blister in my face.
02:20 So I knew right away that there was something wrong.
02:23 But I did not have so much knowledge about EB.
02:27 The symptoms did get worse as I got older.
02:30 When I was a child, the wounds healed faster than now.
02:35 I was born with ten fingers,
02:37 but sadly, with time, they grow together,
02:41 which makes it very difficult to do everyday stuff.
02:46 (SCRUBBING)
02:47 (RUSTLING)
02:48 (RUSTLING)
02:49 (RUSTLING)
02:50 (RUSTLING)
02:51 I had a happy childhood,
02:54 but it was some problems at school
02:57 and I was different from the other children.
03:00 So when I became a teenager,
03:02 I had a lot of body issues
03:05 and I didn't like the way I looked in my late teens.
03:08 I began to get the wounds on my scalp,
03:11 which meant that the hair started to fall off.
03:15 So therefore, I had to get a wig
03:18 and now I almost don't have any hair left.
03:22 (KNOCKING)
03:23 (DOOR OPENS)
03:24 (DOOR CLOSES)
03:25 Hi, hi.
03:26 Hi, Sanja.
03:27 Come in.
03:28 Tak, tak, tak.
03:29 Kompanj, kål, kaffe?
03:30 Yeah.
03:31 (DOOR OPENS)
03:32 My family was very supportive growing up.
03:38 They always helped me and supported me
03:41 and they didn't let my EB stop me and stop them.
03:48 I always knew since I was a little child
03:51 that I had to be careful with her and to protect her.
03:56 I remember some of the photos.
03:58 I felt happy and safe and loved.
04:02 My parents never said that you can't do that because of EB,
04:06 but of course they were always afraid of something happening.
04:10 I still feel protective about Sanja.
04:12 I'm trying not to because she often gets maybe a little irritated
04:20 because she knows that she can do things
04:23 and that she can go outside with others and just be like us.
04:28 Hi, Sanja.
04:29 Oh, hyggelig å se dig.
04:32 My friends have never treated me like a friend
04:35 because of EB.
04:36 They help me with stuff I can't do by myself,
04:40 but they don't treat me any different.
04:42 And sometimes they even forget that I have EB.
04:46 It's difficult to get all the hair hidden with this one.
04:52 You look very good.
04:53 You look nice.
04:54 See you in a little while.
04:55 You have this really strong willpower
04:58 and you don't care about that people look at you
05:02 because people have a tendency to stare.
05:04 You still choose to stay positive.
05:08 And that really amazed me.
05:11 I do experience people staring at me,
05:14 and that was maybe a little difficult when I was younger.
05:18 I prefer that people ask me what's happened to me
05:23 rather than stare.
05:24 People sometimes ask me questions about my condition,
05:28 both in public and in social settings or on social media.
05:32 Questions annoy me sometimes if they're rude or not nice.
05:38 Hey!
05:41 Hi!
05:42 I remember last time at the concert,
05:44 the guy who was so angry with me
05:47 because I was trying to protect you.
05:49 A lot of people were pushing and yelling.
05:53 Yeah, but you're so thick-skinned about it.
05:56 Yeah, yeah.
05:57 Yeah, amazing.
05:59 I think you feel very safe with us.
06:03 The advocacy work I do is to share about my life with EB,
06:09 to raise awareness about the condition,
06:12 because it's very rare.
06:14 And I want to show others that it's possible to live
06:17 a happy and good life,
06:19 even if you are disabled or have any problems.
06:24 You're down to do everything, always.
06:27 You're such a beautiful human being with the best energy.
06:32 I'm so proud of you,
06:33 the fact that you've grown up through so many difficulties,
06:37 but you just keep on fighting, no matter what.
06:42 We're gathering always at your place.
06:45 We have these dinners and parties.
06:50 Always the life of the party.
06:52 Always, always been.
06:54 I'm most proud of Sanja for finishing school,
06:57 a bachelor's degree,
06:58 with all her routines every day.
07:02 And then also spreading awareness
07:04 through all the country and to people and to children
07:08 that maybe are in similar situations.
07:12 Living with EB is difficult,
07:14 but having EB doesn't mean I don't have a good life.
07:20 I travel, I go to concerts.
07:22 Yeah, I do the stuff I love and enjoy.
07:25 I worked a lot with myself
07:28 and got support from mostly my friends and family.
07:34 I think that's very important,
07:36 to love yourself even if you look different.
07:39 #EBONDFOREVER
07:44 #EBONDFOREVER
07:49 #EBONDFOREVER
07:54 #EBONDFOREVER
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