By Rebecca Drew
STRANGERS think this teenager is abused at home because of a rare INCURABLE disease that causes daily skin blisters and raw open wounds just from walking, eating and getting dressed.
When student, Ariana Covarrubias (18) from Los Angeles, California, USA, who lives with her parents, Guadalupe and Guillermo, was born, doctors noticed that she was missing the skin on her feet and legs and she was later diagnosed with rare condition, Epidermolysis Bullosa (EB).
Ariana’s condition means that she is in constant pain when she walks, showers, eats or gets dressed as it causes her skin to rip and blister. Despite this, she remains positive through her Instagram and YouTube channel whilst trying her best to manage her condition through taking pain medication and changing her bandages daily to keep her skin clean and infection free.
EB leaves Ariana feeling isolated sometimes as she struggles with the stares she receives when she’s in public.
People ask her questions about her skin and assume that her condition is either down to being abused at home or from being caught in a horrific fire or accident- now she is working hard to break this stigma attached to her condition for future generations of EB sufferers.
“EB is hard. It affects me in many more ways that I could explain. Physically, it hurts to walk, to shower, to eat, to put clothes on. To do anything really because my skin is so fragile it just blisters with any activity that I must do,” explained Ariana.
“I use a wheelchair for when the pain in my feet is just unbearable, and I was placed on a feeding tube at age seven, for when eating is just too complicated for me. And well mentally is just a whole other story.
“I’ve suffered from depression, I get a lot of anxiety when I have to do my daily bandage changes. Mentally is more hard to treat but I try my best to not let the pain and stares make me feel less valuable.
“EB overall is very hard to deal with and because it’s the skin, I feel people never realise how much I go through with this condition. It makes me feel sad, angry, isolated. But it also makes me feel motivated to help others and raise awareness.
“I don’t want the future generations with EB to feel this way and so it makes me feel motivated to bring diversity into the world and to somehow turn people into being more accepting of those who look ‘different’ from society’s norms.
“It’s hard to really manage an illness that sadly I have no control over. As the years go by, it’s upsetting and depressing to see my hand and fingers starting to fuse, or the wounds taking longer to heal, or my ability to even walk around my house starting to lessen. But I do the most that I can to manage EB.
“Through the day I’ll pop at least five blisters that later turn into wounds. There’s not a day where I don’t have to pop one or where I don’t have to replace a bandage through-out the day due to leakage.
“I’d say the most challenging thing is the stares. Although my EB is something so personal, it’s also something extremely visible. I get stares and questions and assumptions every single day.
“Every time I’m out and about, I’m stared at or questioned. The assumptions made are endless. They think I’m abused at home, that I was in a fire which is the most common one, that I was in an accident, second most common, or that I’ve had a fall and that’s the reason why I’m all wrapped up in bandages.
“The most difficult thing about living with EB is standing out from the crowd when I just want to blend in without out being stared at, like everyone else.”
Epidermolysis Bullosa (EB) is the name for a group of rare skin disorders that cause the skin to become very fragile, meaning that any trauma or friction to the skin can cause painful blisters.
The condition is caused by a faulty gene which both of Ariana’s parents are carriers of despite not having EB themselves.
There is no cure for EB so treatment aims to relieve symptoms and prevent infections from developing.
Ariana has the second most severe form of EB, called recessive dystrophic, her younger brother, Angel, also has the condition.
Ariana visits a specialist at least once a week and has an iron infusion at least once a year and hydrotherapy where doctors look at every wound she has. As well as this, she has had surgeries on her hands to prevent them from fusing and surgeries to expand her oesophagus so she can swallow.
She explained how she uses social media to remain positive.
“I try my best to be positive. When I created my Instagram and YouTube channel, my end goal was to become a positive influence to others. I use these platforms to express myself, to be myself, and to be quite honest, the outcome has been amazing,” she said.
“People have been extremely supportive which helps me to continue being positive. I stay positive by doing what I love, whether it be watching a movie, hanging with friends or going to a concert. I try to do things that I enjoy despite having to physically pay the price later. But I must say that it’s not easy at all.
“My real friends don’t care for it. They’re there when I post about my bad days but they’re also there for when I’m feeling not so bad. As I’ve grown, I’ve realised that my friends will never fully understand my struggles or pain. As long as they’re there for me though, I’m grateful.
“Those who surround me feel very proud of me and inspired by me in their own lives.”
Finally, Ariana shared her words of advice to other people suffering with EB or other conditions that might make them stand out from what society views as ‘normal’.
“For anyone who may be going through this, this a severe illness, I want to say that we can do this. I know it’s extremely hard, but I believe that god gives the hardest battles to the strongest soldiers,” she said.
“No matter if you’re in a wheelchair, with Down’s syndrome or an amputee, together we will fight for more diversity in society and to stay positive always.”