SANJA was born with the rare skin condition, Epidermolysis Bullosa - EB for short - which causes blisters to form uncontrollably on her skin, which will then "tear at the slightest touch". There is no cure for the condition, so Sanja has no choice but to spend four hours each day changing her bandages and treating her wounds in an attempt to prevent infection. She was diagnosed with the most severe type of EB and takes painkillers on a daily basis to enable her to go about her life. Sanja told Truly: "It's often frustrating to live with EB because it's painful and it's very time-consuming". When she was born, doctors told her parents that she wouldn't survive - but Sanja proved them wrong, with help from her parents who set the tone during her childhood: "My parents never said 'You can't do that because of EB' but of course they were always afraid of something happening." When Sanja reached her teenage years though, blisters on her head meant that her hair began falling out. She started wearing a wig, but still remembers feeling "different from the other children" and as a result "had a lot of body issues and I didn't like the way I looked". Sanja's older brother, Zlatko, watched her go through everything growing up and admits that "I still feel protective of Sanja - I'm trying not to because she often gets maybe a little bit irritated because she knows that she can do things... And just be like us." His support, as well as the support of Sanja's friends, has enabled her to live life to the full - despite the constant judgement she receives in public and online: "I do experience people staring at me... The questions annoy me sometimes if they're rude or not nice." Sanja has noticed that her friends "often forget" that she has EB - and they see her as "the life of the party". In recent years, Sanja has found a role for herself on the board of a Norway-based charity that supports young people with EB and she has become a voice for others with her condition. And Sanja's attitude makes her the perfect advocate: "I think it's very important to love yourself even if you look different."
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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 still swill every stop.
00:09 I can't escape the pain and there is no cure.
00:13 It's frustrating to like see your body just getting...
00:17 um...
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
00:55 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,
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, ow.
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.
02:08 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.
02:24 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 I had a happy childhood,
02:49 but it was some problems at school
02:52 and I was different from the other children.
02:55 When I became a teenager, I had a lot of body issues
03:00 and I didn't like the way I looked in my late teens.
03:03 I began to get the wounds on my scalp,
03:06 which meant that the hair started to fall off.
03:10 I had a lot of problems with my hair.
03:13 So I had to get a wig.
03:16 Now I almost don't have any hair left.
03:20 -Hi, hi. -Hi, Sanja.
03:26 -Come in. -Thank you.
03:28 -Coffee? -Yes.
03:30 My family was very supportive growing up.
03:36 They always helped me and supported me
03:39 and they didn't let me down.
03:42 They didn't let my EB stop me and stop them.
03:48 I always knew since I was a little child
03:52 that I had to be careful with her and to protect her.
03:56 I remember some of the photos.
03:59 I felt happy and safe and loved.
04:03 My parents never said that you can't do that because of EB,
04:07 but of course they were always afraid of something happening.
04:10 I still feel protective about Sanja.
04:13 I'm trying not to because she often gets a little irritated
04:20 because she knows that she can do things
04:24 and that she can go outside with others and just be like us.
04:28 -Hi, Sanja. -Nice to see you.
04:32 My friends have never treated me differently because of EB.
04:37 They help me with stuff I can't do by myself,
04:40 but they don't treat me any different.
04:43 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. You look nice.
04:54 See you in a little while.
04:56 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.
05:05 You still choose to stay positive,
05:08 and that really amazes me.
05:10 I do experience people staring at me,
05:14 and that was maybe a little difficult when I was younger.
05:19 I prefer that people ask me what's happened to me
05:23 rather than stare.
05:25 People sometimes ask me questions about my condition,
05:29 both in public and in social settings or on social media.
05:33 Questions annoy me sometimes.
05:36 If they're rude or not nice.
05:39 -Hi. -Hi.
05:43 I remember last time at the concert,
05:45 the guy was so angry with me
05:48 because I was trying to protect you.
05:51 A lot of people were pushing it.
05:54 Yeah, but you're so thick-skinned about it.
05:58 It's amazing.
06:00 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
06:16 that it's possible to live a happy and good life,
06:20 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,
06:34 the fact that you've grown up through so many difficulties,
06:38 but you just keep on fighting, no matter what.
06:43 We're gathering always at your place.
06:46 We have these dinners and parties.
06:50 Always the life of the party. Always, always been.
06:54 I'm most proud of Sanja for finishing school,
06:57 a bachelor's degree, with all her routines every day.
07:02 And then also spreading awareness through all the country
07:07 and to people and to children
07:09 that maybe are in similar situations.
07:12 Living with EB is difficult,
07:15 but having EB doesn't mean I don't have a good life.
07:20 I travel, I go to concerts, 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.
07:33 I think that's very important,
07:36 to love yourself, even if you look different.
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