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).
Arianaās 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 sheās 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.
āEB 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,ā explained Ariana.
āI 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.
āIāve 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.
āEB overall is very hard to deal with and because itās 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.
āI donāt 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 ādifferentā from societyās norms.
āItās hard to really manage an illness that sadly I have no control over. As the years go by, itās 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.
āThrough the day Iāll pop at least five blisters that later turn into wounds. Thereās not a day where I donāt have to pop one or where I donāt have to replace a bandage through-out the day due to leakage.
āIād say the most challenging thing is the stares. Although my EB is something so personal, itās also something extremely visible. I get stares and questions and assumptions every single day.
āEvery time Iām out and about, Iām stared at or questioned. The assumptions made are endless. They think Iām 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 Iāve had a fall and thatās the reason why Iām all wrapped up in bandages.
āThe 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.ā
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 Arianaās 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.
āI 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,ā she said.
āPeople 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 itās not easy at all.
āMy real friends donāt care for it. Theyāre there when I post about my bad days but theyāre also there for when Iām feeling not so bad. As Iāve grown, Iāve realised that my friends will never fully understand my struggles or pain. As long as theyāre there for me though, Iām grateful.
āThose who surround me feel very proud of me and inspired by me in their own lives.ā
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 ānormalā.
āFor anyone who may be going through this, this a severe illness, I want to say that we can do this. I know itās extremely hard, but I believe that god gives the hardest battles to the strongest soldiers,ā she said.
āNo matter if youāre in a wheelchair, with Downās syndrome or an amputee, together we will fight for more diversity in society and to stay positive always.ā
For more information see www.instagram.com/the0nlyariana AND www.youtube.com/channel/UC3650jmdLBknBgc1CxKBqKA