By Martha Hewett @Martha_Hewett
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Shot By: Ariana Covarrubias
Producer: Martha Hewett, James Thorne
Editor: Beth Angus
Ariana Covarrubias, 20, from Los Angeles, was born with Recessive Dystrophic Epidermolysis Bullosa, commonly known as EB.
The condition is caused by a lack of protein which makes the skin incredibly fragile where even the smallest of frictions result in painful blisters.
Ariana, who was born with the second most severe form of EB, has spent much of her life covering up her body due to strangers telling her she looked burnt or abused.
Ariana told Truly: “From a very young age I had to deal with very rude comments – I want people to realise that yes I have EB and it affects me every single day, but I am still living my life.”
Many symptoms of EB makes life incredibly painful for Ariana, but one of the worst is changing her bandages.
Ariana explained: “I have to change my bandages every other day – I don’t change them every day because it’s a super painful and overwhelming process.”
The most affected parts of Ariana’s body, which are her feet and arms, must be covered up at all times to avoid tearing the skin.
This process is both mentally and physically difficult for Ariana.
“Every time I’m taking off the bandage, I’m seeing a constant reminder of how little control I have over my body.”
The activities that can cause blisters on her body are things people often take for granted – such as eating, which can cause blistering in the mouth, showering and even walking.
“My feet are actually one of my worst areas due to walking, the constant pressure causes blisters on the bottom of my feet.”
In 2007, Ariana went through an incredibly traumatic experience which resulted in her being put on a feeding tube.
Blistering and scarring in her oesophagus meant it became too narrow for food and even saliva.
Ariana lost so much weight that without hospitalisation, she wouldn’t have survived.
“For several years I was connected to a machine that would feed me every few hours, then once I got older and reached puberty, I started to gain weight and strength in eating.”
Now, Ariana only uses her feeding tube to administer medicine, but she still has mixed feelings about it.
“I know that without my feeding tube I wouldn’t have made it this far, however it gives me mixed emotions because I am unable to wear crop tops and certain types of clothing like other girls my age.”
Her inability to dress like girls her age is something Ariana has had to deal with throughout her whole life.
The blistering and scarring on her hands has meant she doesn’t have any fingernails, so she was never able to wear nail polish like her friends, nor was she able to wear dresses or high heels.
“EB made my life as a child extremely difficult – I noticed at an early age that I was incapable of doing a lot of things compared to other children my age.”
As she’s gotten older, Ariana has found her inner self-confidence through sharing her experiences on social media, but she still has to endure stares and cruel remarks from strangers.
“People in public stare at my skin every single time I’m outdoors – there is never a day where I’m not stared at or at least asked one question about my skin.”
There are some people who ask harsh and invasive questions, such as whether she had undergone some form of abuse at home.
“Oftentimes people would go up to my parents and ask if I was burned or if I was in an accident.
“People can be extremely cruel out there, the comments that have been made towards my skin and appearance have been endless.”
Despite these negative experiences, Ariana has found an online community who support and admire her openness of living with such a difficult condition.
“I started vlogging in 2017 because I felt really lonely and I realised there was no one like with EB sharing on social media or being a representation for others.”
Through YouTube and Instagram, Ariana is normalising EB and showing that there is more to an individual than their appearance.
“I wanted to be that person who would sit in front of a camera or pose for a picture and show their body in a positive and unique way and motivate others to love themselves for who they are.”