The 20-year-old with butterfly skin - born different
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Date: 2023-09-12
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Comments and reviews: 19
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There are milions of positive people around the globe, and with the whole-life-time condition, youre the most mentally postive above those milions.
Why do i got here?
It bcoz just in this day, i found out that my mom (68 yo) has EB too, since in the past 5 days or so she develop bilsters on her hands and then feet.
Its so frustrating for my mom (also me n my sister, because when the air is hot my mom will get itchy and rub her skin and it will develop the blisters.
My heart is broken when i know that my mom had this super rare genetic disease.
If you guys had info about EB foundation, please lemme know in reply.
Thank you
reply
There are milions of positive people around the globe, and with the whole-life-time condition, youre the most mentally postive above those milions.
Why do i got here?
It bcoz just in this day, i found out that my mom (68 yo) has EB too, since in the past 5 days or so she develop bilsters on her hands and then feet.
Its so frustrating for my mom (also me n my sister, because when the air is hot my mom will get itchy and rub her skin and it will develop the blisters.
My heart is broken when i know that my mom had this super rare genetic disease.
If you guys had info about EB foundation, please lemme know in reply.
Thank you
reply
Arpan
I think she doesn't look bad enough for people to constantly, people may assume anything but who goes up to somebody and ask what kind of accident they got into lol. One thing I learned, this is a great inspiration for those who are suffering from this disease by showing as they will get older they would have better control over their situation.
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I think she doesn't look bad enough for people to constantly, people may assume anything but who goes up to somebody and ask what kind of accident they got into lol. One thing I learned, this is a great inspiration for those who are suffering from this disease by showing as they will get older they would have better control over their situation.
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Lauren
I think she rocks it! She looks like any other teenager/young adult to me, seriously! Especially when she puts on her cute outfits and does her makeup, I would have never thought anything different about her. Even with her feeding tube and bandages, I think she does an amazing job of incorporating her style with her God given body!
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I think she rocks it! She looks like any other teenager/young adult to me, seriously! Especially when she puts on her cute outfits and does her makeup, I would have never thought anything different about her. Even with her feeding tube and bandages, I think she does an amazing job of incorporating her style with her God given body!
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June
You are the first girl I've seen with this disease. Sorry for you I understand what your going through my grandson born with it Also & he's 19 now. He's hands & feet are the worst. As you said walking & using hands so much. Your in my prayers also. Stay as healthy & strong as you can. Good luck in future endeavors.
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You are the first girl I've seen with this disease. Sorry for you I understand what your going through my grandson born with it Also & he's 19 now. He's hands & feet are the worst. As you said walking & using hands so much. Your in my prayers also. Stay as healthy & strong as you can. Good luck in future endeavors.
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sarene
Such a beautiful girl and she is so courageous and inspiring. Screw all the rude folks and haters out there. they are generally miserable in their own lives or otherwise uncomfortable in their own skin! You just keep doing you and live your life and just be happy - Thanks for sharing your story with the world! -
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Such a beautiful girl and she is so courageous and inspiring. Screw all the rude folks and haters out there. they are generally miserable in their own lives or otherwise uncomfortable in their own skin! You just keep doing you and live your life and just be happy - Thanks for sharing your story with the world! -
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Brenda
You are amazing with the pain your disease gives you because you are so active and doing the painful procedure of changing your own bandages every day, I truly admire your determination and strength.
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You are amazing with the pain your disease gives you because you are so active and doing the painful procedure of changing your own bandages every day, I truly admire your determination and strength.
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Ella
I follow her on TikTok and she-s so honest about EB and everything that comes with it. She doesn-t shy away from her diagnosis. I appreciate her openness about it even if it makes people uncomfortable
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I follow her on TikTok and she-s so honest about EB and everything that comes with it. She doesn-t shy away from her diagnosis. I appreciate her openness about it even if it makes people uncomfortable
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Versedbug
So painful it-s been like in the third-degree burns aren-t painful, that-s the point, it-s classified because it burns off the nerve endings so you literally don-t feel pain
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So painful it-s been like in the third-degree burns aren-t painful, that-s the point, it-s classified because it burns off the nerve endings so you literally don-t feel pain
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CLo!
Young lady! You are the first case of EB that I noticed the skin is not horribly bad. Please continue to strive. I hope God finds a cure for you and all those with EB.
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Young lady! You are the first case of EB that I noticed the skin is not horribly bad. Please continue to strive. I hope God finds a cure for you and all those with EB.
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D-v-l
She is amazing everyone that has this is amazing, I just wanna say stop bullying people because of how they look, it-s who they are on the inside not outside.
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She is amazing everyone that has this is amazing, I just wanna say stop bullying people because of how they look, it-s who they are on the inside not outside.
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MintChocolate
Okay but like. she-s gorgeous! Not even saying that because she-s got EB or anything. She-s legit so cute! And holy smokes she can rock a red lip! -
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Okay but like. she-s gorgeous! Not even saying that because she-s got EB or anything. She-s legit so cute! And holy smokes she can rock a red lip! -
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Kitty
Whats so -rude- about asking someone if they had been burned or about your home life? I could think of way worse things that would be considered -rude-
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Whats so -rude- about asking someone if they had been burned or about your home life? I could think of way worse things that would be considered -rude-
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Sunshine
Ari is an amazing young women! Seen her on Tik Tok and fell in love her! She is so kind and friendly and beautiful and smart and has a huge heart!
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Ari is an amazing young women! Seen her on Tik Tok and fell in love her! She is so kind and friendly and beautiful and smart and has a huge heart!
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It's
I have only seen males with EB. I think you are doing such positive things to bring awareness for females and you should be very proud of yourself!
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I have only seen males with EB. I think you are doing such positive things to bring awareness for females and you should be very proud of yourself!
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Fulvio
I Wish you all the best you beautiful strong soul. Medicine research Is going ahead. They'll find the cure! Hugs!
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I Wish you all the best you beautiful strong soul. Medicine research Is going ahead. They'll find the cure! Hugs!
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Teresa
I feel so bad for people that are born with this disease. I wish nothing but happiness for this courageous woman.
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I feel so bad for people that are born with this disease. I wish nothing but happiness for this courageous woman.
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Cizin
Wow. You are an amazing person and a true champion. You are truly an inspiration. Continue to follow your dreams!
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Wow. You are an amazing person and a true champion. You are truly an inspiration. Continue to follow your dreams!
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Dont
Hi 38. Anyone who shows the way to something good has the same reward as the person who does it. (Muslim)
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Hi 38. Anyone who shows the way to something good has the same reward as the person who does it. (Muslim)
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Maria
Makeup can't be good for her skin condition? But if it makes her more confident. brave young girl
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Makeup can't be good for her skin condition? But if it makes her more confident. brave young girl
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