“My name is Ariana and I am a 19-year-old college student who is continuously fighting to make a positive impact in this world, in a body that slowly wants to deteriorate and whose body doesn’t fit the norm of societies ‘beauty standards’.
Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns. They also noticed my right foot had zero skin and there were tiny blisters all over my body. The doctors noticed my skin was peeling off from just a simple touch. After much testing I was diagnosed with a life-threatening skin disorder called Recessive Dystrophic Epidermolysis Bullosa or ‘EB’. This genetic skin disorder is caused by the lack of a protein called collagen 7. In a typical able-bodied person the two layers of skin are held together by the protein, (or the stapler, how I like to call it). For those with EB we don’t have the protein (stapler) that would typically hold the two layers together, hence why our skin peels off and blisters by the slightest friction.
There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction. Growing up was extremely difficult. I remember coming back home crying because I was never fully able to relate to girls my age. The worst days growing up would be when I’d see others doing things I knew I could never do. Like seeing other girls paint their nails while I looked at my fingers wishing my nails hadn’t fallen off completely. Or when I’d see girls wearing cute heels to the school dances and I’d being stuck with the same kind of boring shoes that wouldn’t cause more wounds on my feet.
Without a doubt those experiences were difficult but the worst days I encountered were those when I’d get home from school crying. My classmates had spread a rumor I was contagious and no one should talk to me. Despite my young age, this was when I realized my appearance would affect the way others treated me and my ability to fit in society. It was devastating.
EB is something I can’t control and has placed me in the hospital hundreds of times in situations no one could imagine. After I was born I was in the NICU for almost 2 months until doctors felt I was healthy enough to go home. I had surgeries perhaps once or twice a year but none too serious at that point. My daily bandage changes took up to two hours and I had once-a-week physical therapy sessions. In 2007 I had without a doubt one of the most traumatic and overwhelming experiences of my life. EB is a skin disorder that affects the external body but can also affect the individual internally. That being said, the esophagus tends to blister, just like my hands and feet do. This creates scarring that naturally makes the esophagus have the desire to close completely. Typically this is resolved by a surgery called an esophageal dilation. However in 2007 the stricture in my esophagus became so limiting I was not even able to swallow my own saliva.
Imagine a 7-year-old that had already experienced enough medical trauma compared to any other kid her age who was now throwing up every 10 seconds because her mouth filled with saliva she couldn’t swallow. I started to throw up blood and that was when my parents knew there was no escaping the ER. Many X-rays and tests later they discovered it was once again my esophagus acting up but much more severe. It was so closed that after conducting the typical dilation my esophagus didn’t go back to ‘normal’. I spent a week in the hospital with solely IV fluids and I continuously cried, pleading to my parents and doctors to do something so I could go back to eating. The doctors didn’t give my parents much hope on my ability to eat coming back anytime soon and offered to place a feeding tube or ‘she won’t make it much further’.
My parents had no option. It was either I gained my weight and nutrition back or would just watch me as I rapidly lost a ton of weight They would see my wounds taking longer to heal because they weren’t receiving the proteins they required. A hard decision without a doubt, but a couple days later I was put into surgery once again to get my feeding tube that little did I know would be my key to success for the rest of my upcoming years. My stay at the hospital lasted a little over two weeks. Between malnutrition, a feeding tube, and making sure my parents understood this new routine, it was extremely rough.
Months passed by and I was getting accustomed to my every 3-hour feedings through the tube. I missed eating and tasting food desperately but it was for the best to let my esophagus heal on its own. Little by little I started to eat once again. First, I started by just eating very soft foods like yogurt, eggs and sandwiches if I was feeling brave enough. A year after that traumatic incident of June 2007, I was eating again like nothing had happened and my every 3-hour G-tube feedings turned to just a nightly routine. This was my daily life for several years, going to school, eating whatever I desired, coming back home to my 2-hour very painful bandage changes and by 11 pm I’d be plugged back in to my feeding machine.
Now I only require my G-Tube for medications and when the pain from my mouth/esophagus blisters become too unbearable for me to eat. I can now eat whatever I desire (as long as it’s nothing too hard and difficult to chew) and have been able to maintain a good weight for someone with EB.
In my nearly 20 years of life I’ve gone through almost 10 surgeries. I’ve had hundreds of iron infusions, doctor’s visits and hospitalizations. I’ve gone through thousands of painful and overwhelming bandage changes. Epidermolysis Bullosa is not easy and it is an illness that will eventually get the best of me until my body can’t fight no more. I can’t even explain how many times I’ve sat on my bed bawling because my friends have lost the battle with EB and the pain and wounds became too unbearable for them to handle. My hands don’t have enough fingers for me to count how many friends I’ve lost to this terrible and deteriorating illness. As I sit here and write this, I try to stay hopeful one day there will be a cure but for now I got to keep fighting.
In October I turn 20 and I can’t wait to show my doctor’s how wrong they were when they told my parents I’d only live for a few months. Until then I’ll continue to raise awareness through my social media and YouTube videos. I’ll continue to go to college and attend concerts. I’ll continue to inspire others to love themselves and show others we don’t have to look ‘normal’ in order to be accepted in society. I’ve been getting more involved and am trying to get my story out there to show others our physical differences should not limit us or define our success. I’m a passionate woman for all things makeup and fashion and I aspire to be the change in the media and beauty industry and prove to others ‘that girl with bandages’ can and will get far in life, no matter how painful or difficult the road may be.”
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