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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