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zakruti.com » Blogs and People » Truly
My skin tears like tissue paper - born different

My skin tears like tissue paper - born different

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Rating: 4.5; Vote: 2
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
Date: 2023-09-12

Comments and reviews: 28


Hello, Sanje! Thank you for posting this! You are amazing. And what you live through every day is something I call 'Beast Mode', which is just facing it head-on with head up, and not letting anything or anyone tear you down. You have every right to be here in this life, with us (humanity, getting the most joy possible! Keep on doing what you're doing. Others will see you and want to be like you, and finding their own Beast Mode.
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full of people who dare to complain about so many superficial things in their little lives while many people with very painful illnesses and symptoms live this life hard, courageously, without saying anything, while some pain must be truly horrible. my heart breaks for these people, it makes me sad and I find life unfair.
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Have you been checked for copper deficiency. too much zinc or iron will promote copper depletion. and copper is required for elastin as part of the collegen matrix, and will encourage stem cells stimulate production.
Just asking, do your own research and please do not reley on doctors to give you answers.
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I don't know why these folks that goes thru this, if they just do a full body detox and a diet change, this stuff would slowly go away. your doctor will not tell you this, but someone with knowledge of healing the body naturally may be able to help.
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I can't imagine god mades such torture. This brave girl and others like her endure the worst pain you can imagine, every day, every second of there life.
I am thinking about John Hudson, Jonathan Pitre. etc. Let's sand some love please-----
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May God give u peace, happiness and more blessings upon u. Such a beautiful brave woman u are. l think God brought u in this world with a purpose and u are living it now -by teaching ourselves to be happy. And acceptance. l love u-
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This is why technology needs to perfect cloning and work with consciousness. Clone her but fix her chromosomes and then transfer her consciousness to the clone. This could help so many with imperfections in their dna.
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She has a nice figure and I love how she looks with the blonde wig. I think butterfly skin it's one of the most brutal conditions to deal with but she seems to have a great support system and is a great spokesperson for it!
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She's the 2nd person I've seen with This disorder, and I simply can't imagine how miserable she must be everyday. I know people say this a lot, but seeing things like this really put things I to perspective.
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Thank you for showing us what you deal with and the truth about the pain and absolute necessity for good pain management! You are very beautiful, truly inside AND out! Sending you positive energy and love!
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I would think that using bandages with adhesive on them would be hard on your skin. Wouldn't it remove your skin when it's being taken off? Personally, I'm allergic to adhesive, it makes my skin feel burnt.
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I can-t even say I understand her pain. I have a painful medical condition but nothing like hers. That is horrible, poor thing. I wish her the best and I wish for her to have more good days than bad.
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My friend has EB but not to this degree. I can't help but notice how much she and this woman look alike tho! Larger nose, thin lips and small chin. Are there facial markers with EB?
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I feel very bad for her but thank god she-s in Norway. If she was in the United States she would be forced into a nursing home at a young age and probably medically bankrupt.
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You-re such a strong, beautiful and brave person. You and your family inspired me and I believe lots of people here hearing your story are inspired. Thank you for sharing your story.
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What a loving family she has. She-s still very beautiful outside and in side it take a strong and amazing person to go throw something like this I wish u all the luck in the world -
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You are strong and beautiful. You have the power to inspire others to love themselves and I appreciate you putting yourself out there and sharing your story.
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You are a beautiful and strong woman! You are such an inspiration. You handle such a difficult/ painful condition with dignity and grace. I-m wishing you all the best!
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If the Akashic Records exist, this girl's entry probably says that she will never be caught lamenting her condition or weeping because of it!
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I don't feel sorry for how she looks because she is very pretty even with her condition but i DO feel sorry she has to live in constant pain
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So inspiring your challenges have brought us all closer together Sonia - you have a very special role and you-re inspiring to us all!
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If I had this condition, I absolutely wouldn't be able to cope and I'd 100% comit suicide. This is one brave strong woman
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You're Beautiful - It's not what's on the outside that Matters beauty is from the inside out you're very beautiful Girl----
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It is an everyday nightmare for this brave woman. I think that God only gives such a task to the strongest souls.
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Life is just too cruel. I can not imagine how you cope with this terrible condition. I wish you all the best.
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My heart breaks for you and anyone who has this condition. I only hope they find better treatments for you. -
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Topical Manuka honey is excellent or skin, as is Tamanu Oil, which can even be used on third degree burns.
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You my darling are beautiful inside and out. They 9nly stare cos they are in awe of your loveliness!
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