6 Horrific Realities When Your Skin Falls Off For No Reason
Children are less bundles of joy and more tiny balls of stress and imminent danger. What if you feed your baby something unhealthy? What if you swaddle her too tight? What if you accidentally let him watch all three seasons of Hemlock Grove? These are all normal concerns for a new parent to have. But, nobody ever really stops to think about what would happen if their child got an exotic, gruesome disease the family doctor had literally probably never seen before.
The subject of today's article was born with Epidermolysis Bullosa (EB), or "Butterfly Skin Disease." Despite its adorable name, Butterfly Skin Disease is an excruciatingly painful and deadly illness that gifts your skin with the raw durability of soggy tissue paper. We spoke with 16-year-old Lucy Beall, who told us ...
Childhood Can Be An Unnavigable Nightmare
For Lucy, doctors' visits were like a trip to the zoo where she was the main attraction: "They would bring interns in to look at me, and they would all ask questions." This is because Epidermolysis Bullosa is rare -- not only in the sense of being a rare disease, but also in that its effects are different from patient to patient. When an EB patient comes through the door, doctors take notice -- like as if Kanye West just came somersaulting in and juggling a bunch of unidentified animal species.
What's so interesting about Epidermolysis Bullosa? Lucy explains, "I don't have collagen seven, anchors my skin to my muscles." Basically, the slightest pressure will tear her skin straight off her body like the guy in Poltergeist. "When I was a child, my skin would just slide off when I would fall down. It was like a third-degree burn on my body." To keep her skin where her skin belonged, Lucy had to take special precautions. "I would wear bandages covering most of my body. I would wrap from my shins to my thighs -- I looked like a little cotton ball." Also, you know how taking off a Band-Aid tends to rip out some hair along with it? Imagine that process if your skin is barely clinging to your muscles.
If you think you have a strong enough stomach, you don't have to imagine. (Graphic/heartbreaking content)
So, not only did Lucy have to walk around as a tiny mummy, but the bandages required a complicated process to prevent infections. "If the wounds got stuck to the bandage, you had to soak in a bathtub to get the bandages off. But, it still rips off the new skin. You have to do it twice a week. 'It hurts,' I would yell at my mom to stop, but you have to keep going so you don't get infected." Possible infections Lucy could have contracted from her dirty bandages include staph, MRSA, and Sepsis, which can be fatal.
Needless to say, Crocodile Mile was not present at any of her birthdays, though even that didn't mean birthdays were safe. "When I was 10, I got a puppy. I was playing with my puppy, and I fell in the grass and totally skinned my face. There are all these pictures of me at my 10th birthday party, and I have no face."
One of the rare cases where getting puppy kisses becomes the most horrifying thing imaginable.
Lucy's childhood wasn't all bad, though; the upside of having a deadly childhood illness is free admittance to the Make-A-Wish Foundation: "I was a make a Wish Kid," she says. "I got a playhouse with air conditioning so I could play outside in the summer without getting hurt. It was super cool!" Lucy didn't indicate whether or not the "cool" pun was intentional, so it is our duty to assume that it was.
Surgeries Become A Regular Routine
Unfortunately, having skin that slides off at the slightest provocation wasn't the worst of Lucy's problems. "I have inversa, which means ... my insides are extremely fragile." Basically, anything she swallows has the potential to peel her guts like old paint off a wall. "It hurts your GI tract if you swallow something wrong. It will tear off mucous membranes. It would hurt to eat anything besides a slushie. I dealt with that for years."
Meanwhile, your parents had to use the jaws of life to get your ungrateful ass to eat one vegetable.
It all came to a head one night when she was 13. " ... I woke up in the middle of the night, and I couldn't breathe anymore ... I was coughing up blood. We went to the doctor the next day, and I couldn't swallow my own saliva. They had to open the strictures of my throat with a balloon ... my throat would only open 2 centimeters. My doctor said he didn't know how I could eat or swallow anything."
Believe it or not, Lucy's ailments get even more insane. Even going to sleep is a freaking minefield for her to navigate. "When I was 12, I had to go on sleep medication. I couldn't sleep because of the pain. Even now, I can feel my body in my dreams. It's really weird. My eyes are fragile. When I go into rapid eye movement, my eyes get scratched, and the top layer of my cornea comes off. Someone in the medical field describes it as wiping your eyes with sandpaper -- that's a good way to describe it." That's right -- Lucy's skin is so delicate, her eyes get scratched off in her sleep.
Pictured: an injury in progress.
Frequent surgeries are a necessary evil for people with EB. "Scar tissue develops on our hands, and they fuse together over time, like mittens. It is extremely frustrating. I'm getting surgery to fix mine soon, but doctors still can't figure out why this happens, especially since my hands don't get hurt often. My hands aren't completely fused yet -- I still can move my index fingers, thumbs, ring fingers, and, most importantly, my middle fingers, so I'll be OK for another year or so. I can type and write normally, but not for long periods of time due to nerve damage."
Unfortunately, the surgeries aren't permanent fixes. She has to have them regularly, like check-ups. "I have to have the throat procedures twice a year for the rest of my life, and, once I begin the hand operations, I'll have to have those every few years."
There Is No (Legal) Way To Relieve The Pain
The daily pain and lack of sleep inevitably eats away at Lucy, who, despite only being 16, says she feels much older, which is probably a gentle understatement. She doesn't even take any painkillers at the moment, because prescription medication loses its effectiveness over time. "I'm supposed to be on OxyContin, but my mother doesn't want me to be on narcotics yet, because I'm 16 and I might need it later in life, if I need it for a surgery or something." Essentially, Lucy's pain is so bad right now that the idea of it getting worse as she gets older is enough to convince her to save the drugs until she really needs them.
Starting OxyContin and then stopping is even less of an option, unless vomiting and diarrhea sound like they would go well with a digestive tract built like a Kleenex tissue.
Ironically, the one form of pain medication that does offer her some relief is illegal in most states. "My friends in Colorado use prescription marijuana. I tried it when I was there, and it was amazing. I felt no pain." To be clear, the "pain" she's referring to wasn't a badly skinned knee or even the intense internal pain she regularly feels -- Lucy was walking around with an open wound on her elbow that exposed the freaking bone.
"I could still feel it," she says, "but I wasn't consumed by pain as I was before." Even better, when the drug wore off, it happened gradually, with Lucy slowly descending back into the realm of eternal pain she's so accustomed to. When prescription pills wear off, however, the experience is not so gentle.
"For my last surgery, they put me on OxyContin without my prior knowledge," she says. "I've been unmedicated every other surgery I've been on except for the first one. Whenever I woke up, obviously I felt fantastic, but it was a little disturbing. I was almost numb, my brain was clouded, and I had little impulse control. Then, I came down the next day, and that was one of the worst feelings I've experienced. It felt worse than no medication at all. All I could do was try to sleep the entire day until I could move without whimpering pathetically. It made my entire body ache after it had run its course."
Which seems about right, since you can also add fatigue, weakness, and fucking increased pain to that list of side effects.
Unfortunately, Lucy doesn't have any choice when it comes to pain relief. " illegal here in Texas. I cannot understand why OxyContin is legal, but something that works equally as well, if not better, is outlawed. It's unfair ... " Lucy knows a thing or two about unfairness, so her criticism is not without merit.
People Treat Me Like I'm Mentally Ill
Considering how baffling her illness is to actual doctors, it isn't surprising that average people have no idea how to respond to Lucy. "When I was a kid and had sores on my face, people treated me like I had a low IQ." People saw she was covered in cuts and sores and nasty-looking injuries and figured, "No smart kid could possibly have hurt herself that badly, so there must be something wrong with this girl's brain."
" my teachers ... only let me sit in the classroom and play with Barbie dolls." Her teachers were arguably just doing what they thought was best as far as protecting Lucy from physical injury, but, to the rest of her classmates, it just looked like Lucy was a weird kid who wasn't allowed outside and just sat in class playing with dolls by herself. "I was mad about that. It caused a lot of tension between me and my classmates. They would talk down to me."
Ah, that magical age where kids have yet to learn not to be tiny little sociopaths.
Even today, Lucy's social life is occasionally peppered with negative encounters, "I was in shorts and filling up gas, and these teenagers in a bro truck, a huge obnoxious truck, pulled up and said, 'That girl would be hot if it weren't for her gross legs and tiny baby hands.' I'll never forget that."
And in case you're worried that's the most soul-crushing thing you'll read today, well ...
A Lot Of My Friends Are Paralyzed Or Dead
Lucy tries to get on with her life, but, between her everyday pain and people's natural fear and confusion, it's not that easy. "It's hard to have friends," she admits. "They always want to go do things, they don't understand that it hurts to walk." Rather than finding some lazier friends (we're available, kiddo), Lucy found solace in places where she and other kids with this condition can go to let loose and swap war stories with those who can relate. "I'm going to be a counselor at a camp, and most of my friends there who have the same condition can't even walk anymore. I'm the only one who can still walk and open my mouth more than 2 centimeters. The scarring is everywhere; you lose so much mobility. I'm almost a unique case."
The scarring really can get incredibly intense incredibly early. (Graphic/heartbreaking content)
Minor cases of Butterfly Skin Disease don't necessarily have an impact on life span. But, for many sufferers, death from skin cancer by 35 is extremely common, and that's for the kids lucky enough to make it out of infancy. It's entirely possible that Lucy, at 16, is halfway through her life.
"Half of my childhood friends died this year. We didn't know they were going to die -- it happens really quickly. It sounds contrived, but you can't just worry about when it's going to be your time." At an age where she should be worrying about prom, college, and what the fuck One Direction is going to do without Zayn, Lucy has an eerily calm and mature understanding of mortality that the majority of us don't reach until the day we realize that entertainment isn't being marketed to us anymore.
My Life Is Going To Be Short, So I Refuse To Live In A Bubble
Despite her terrifying condition, Lucy has no intention of spending her life hiding from everything. "From a very young age, my mom understood that I would get hurt very badly, but, to her, it was important for me to experience things as long as it was worth it. She understood that my life was going to be short, unfortunately." As awesome as Lucy's mom is, she's still a parent with all the fears and overprotective nature inherent to that job. And despite her advanced wisdom, Lucy is still a teenager. So, when her mom tells her she can't do something, she just does it anyway.
"My mom wouldn't let me ride a bike, but I really, really wanted to ride a bike so badly. Everyday she went to the grocery store, I would practice while she was gone ... she came home one day, and I told her, 'I know how to ride a bike now. I taught myself. You have to let me.'"
A hero of our time.
Bandages, scarring, and exposed arm bones are one thing, but Lucy won't be caught dead looking like a dork at a pool party. "I wasn't supposed to go swimming in anything other than this god awful wetsuit," she says. "But, I was going to a swim party in sixth grade, and I didn't want to wear a wet suit, so I secretly went in a bikini. It was fine. My mom was like, 'Well, that was that.'"
Occasionally, Lucy and her mother have to come to a compromise. Unfortunately, that doesn't always work out. "Every girl wants to learn horseback riding, so my mom got me a miniature horse instead, but the horse was so mean. One time I was riding, and I fell and ripped off all the skin on my knees. My mom was horrified." Lucy has since learned how to ride, so her mom now lets her ride standard adult-size horses. However, no amount of lessons could have convinced Lucy's mom to allow her to cliff jump, so Lucy just went ahead and did that without telling her. "I went cliff jumping without my mom knowing. My friends posted it on my social media, and my mom was like, 'Oh my god.'" So, at the very least, that aspect of Lucy's teenage life is perfectly normal.
Best of luck, Lucy. We're all behind you ... just not on that cliff. That looks scary as hell.
Lucy would love it if you'd consider donating to Debra Of America. Carolyn thinks Lucy is goddamn adorable and would love to hear your stories at firstname.lastname@example.org
For more insider perspectives, check out 6 Weird Realities Of My Life With An Awful Superpower and 5 Awful Lessons I Learned Living With A Mystery Illness.
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