Student dresses lightly to defy 'shredded skin' illness that causes sore scars
A student whose rare skin disorder means even the slightest touch causes excruciating third degree burns has defied her condition to wear revealing dresses. Ariana Covarrubiaz, 20, from Los Angeles, California, promotes body confidence by showing off her scarred body and open wounds that have been caused by a condition that leads to layers of skin to peel away from her body.
Ariana is unable to walk, eat, wear clothes or even hug her mom without her skin ripping and causing horrific burn-like wounds. She has recessive dystrophic epidermolysis bullosa, a condition caused by a faulty gene passed onto children by parents that is found in an estimated one in one million newborns.
But not only has Ariana defied doctors to live beyond the age of one and go on to study at college, she bravely wears light and summery clothes like other women her age to issue a powerful body confidence message.
Ariana, who is training for a career in entertainment at California State University student, Los Angeles, said: ‘Whenever I do any sort of movement or activity my skin just tears and I get blisters and open wounds.
‘I have to wrap half my body up in bandages every day. Everything I do causes me pain, eating, walking, sleeping and wearing clothes.
‘I’ve had to learn how to deal with the pain, because there is no cure. I have to use a wheelchair because my feet are always in pain and even the sun can cause my skin to blister, that’s how sensitive it is.
‘But I am positive and I am still very happy. I still do things I really enjoy, like going to the theatre and seeing friends, and despite being in pain every day I am almost finished at college.
‘I still love to wear nice dresses even if people can see my scars and blisters, and I want to enable people to share body confidence and their physical differences. I like to show that it is still possible to live a happy and healthy life with a condition like mine.’
Ariana was born with recessive dystrophic epidermolysis bullosa, one of the rarest condition in dermatology, for which there is no cure. Her doctors suspect both her mom and her dad carry the faulty gene that causes the genetic mutation, and although both are unaffected themselves, they have an estimated 25% chance of having a child born with the aggressive skin disease.
It means Ariana’s skin is missing a protein needed to knit the skin to the surface of her body, resulting in even the slightest friction causing serious wounds. Many children born with the condition tragically die in childhood and whilst Ariana wasn’t expected to live beyond the age of one, she has grown up to flourish as a young adult.
‘It take about to hours to put bandages on my hands, legs and back everyday, there’s a big risk of infection for my skin so I have to protect my wounds’, said Ariana, who has a brother, Angel, aged eight.
‘My day to day life is difficult, even just eating causes blisters in my mouth and laying in bed breaks the skin on my back.
‘I am in chronic pain every day but I still make sure I do things I like. I still wear make up and wear nice clothes because it makes me feel good.
‘I have a really positive attitude and want to achieve in life. I was given a one year life expectancy, so to be close to graduating from college feels amazing. I do my best to keep going and use what I have to make achievements.’
Ariana is in her final year of college and hopes to work in the entertainment industry when she graduates. Despite her obvious physical challenges, Ariana added she does not feel sorry for herself and instead feels ‘fortunate’ to have survive into adulthood.
One of the main ways she likes to share her remarkable success story is by posting photos of herself online to encourage and promote body confidence. Inspiring Ariana bares all in front of the camera in a bid to help other people become comfortable with their own bodies, despite any physical differences.
She said: ‘I can’t do a lot of the girly things I’d like to do, but I can and do wear what I want most of the time. I am an advocate for my condition and for people who are like me.
‘My goal is to educate people about my condition and I want to show people that a medical condition does not define who you are.’
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