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SANJA was born with the rare skin condition, Epidermolysis Bullosa - EB for short. EB 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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Videographer: Alex Asensi
Producers: Hannah Beaugeard, Tom Buckman & Georgia Embling
Editor: Dalene Low
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00:00 Intro
0:26 Meet Sanja And Join Her 4 Hour Daily Skin Check
2:51 Childhood Memories and Struggles
3:24 Meet Sanja's Supportive Brother
4:29 Meet Sanja's Helpful Friends
7:13 Outro
15 июн 2024
