Constable: Palatine student pushes through pain of skin disorder in search of the positive
The agony Caroline Provost endures during a nightly three-hour ritual to treat her rare skin condition is no worse than it was when she was a little girl. But as a 16-year-old, she's literally got more skin in the game, which means more itching, and more pain.
"I'm used to it, I guess," says Caroline softly, sitting on the patio outside her family's home in Palatine and explains what it is like to live with epidermolysis bullosa. Known as EB, the disorder affects about one in 50,000 people and leaves Caroline's skin as delicate as butterfly wings.
On the inside, Caroline is tough and strong and determined, which is how she makes good on her goal Friday night to play with her marching band peers on the football field as her Palatine High School Pirates beat the Barrington Broncos.
"I was nervous at first, but once I saw everyone out there it was really fun and exciting," Caroline says. "The crowd and band had a great energy. I'm really glad I pushed myself to do it."
Just about everything she does requires self-motivation.
"Obviously, I wish I could look like every other kid," says Caroline, a sophomore whose condition causes her hair to fall out, her fingernails and toenails to be malformed or missing, and blisters to pop up anywhere on her body at the slightest provocation.
EB results in the lack of a protein that binds the epidermis -- outer layer of skin -- to the dermis layer beneath. Just as grass without roots easily rips from the ground, skin without that binding protein tears easily.
Caroline's arms, legs and torso are wrapped in a special foam bandage that covers her fragile skin. Compression sleeves hold those wrappings in place, making it less likely that she'll rip off a piece of skin while moving during the day or sleeping at night.
"She's never had her whole body unbandaged -- ever," says mom Adrienne Provost, who does the bulk of the nightly routine where the bandages are gently removed before a sponge bath. New boils are lanced, a special mesh is applied over deep wounds, and soothing coconut oil is lathered on before the fresh bandages, all cut to fit her body, are wrapped. Pete Provost sometimes dresses his daughter's arms and legs, and a nurse handles the duty once or twice a week.
"I play on my phone or iPad or listen to music," Caroline says, admitting that sometimes the pain makes her cry out a swear word. "Torso always has been my least favorite."
There are four basic types of EB and nearly two dozen subtypes. Caroline's form is known as junctional non-Herlitz, which might affect one in a million people, according to the National Institutes of Health.
Her EB is less severe than some forms and generally doesn't shorten a patient's life. In addition to damaging her skin, hair and nails, it can make her teeth soft and crumbly.
Eleven of her baby teeth had to be removed and her permanent molars were capped in stainless steel by her dentist, Mark Cannon, founder of Associated Dental Specialists of Long Grove, a professor at Northwestern's Feinberg School of Medicine and the research coordinator for the pediatric dental program at the Ann and Robert Lurie Children's Hospital of Chicago.
Caroline was born on Aug. 22, 2005, at Northwest Community Hospital in Arlington Heights. When doctors saw the white bones exposed in her left leg because so much tissue and skin had been ripped away, she was transferred to what is now Lurie Children's Hospital. Because EB also affects mucus membranes and can cause blistering in the mouth, throat, esophagus, upper airway, stomach, intestines, urinary tract and other internal organs, many EB babies die from complications with breathing, nutrition and hydration, or from infections.
With education and support from the Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), the entire Provost family, including Caroline's siblings, Elizabeth, 20, and Patrick, 18, have learned to be advocates and protectors. In grade school, Patrick even carried Caroline's beloved backpack featuring the One Direction boy band, which could have led to some teasing.
But Caroline says she's never been bullied or teased during her years in Palatine Township Elementary District 15 and now Palatine-Schaumburg High School District 211, and has received support.
Neighbor Joe Ahlgrim, 20, a Northern Illinois University student who was a classmate of Elizabeth Provost at Palatine High School, is running Sunday's Bank of America Chicago Marathon to raise money for EB research.
Attending online classrooms through Zoom during almost all of last school year made life easier for Caroline, whose grades qualify her for academic honors. But, she says, "It's good to be in school. It's more normal and I see people."
Orthopedic aide Aaron Morris and physical therapist Tracy Tziortzis help Caroline with some tasks, including maneuvering through the crowded hallways.
"If I walk too much my feet can blister easily," says Caroline, who had been pushed in a wheelchair until she got a power wheelchair. "The power one I can move on my own, so there's that independence. I get to go wherever I want to go. I like the freedom."
She has an individualized education plan that allows her more time and other accommodations because of her disability, but Caroline often doesn't use them. When a teacher said Caroline didn't have to do a class presentation, she told her mom, "He shouldn't underestimate me," and did the presentation.
A hot day, even 72 degrees and humid, can cause her skin to blister, so her school bus is air-conditioned and many activities are off limits. She played a flute duet with her Uncle Hank at home and practices with the marching band after school, but Friday was the first time the conditions were right for her to perform at a game.
"I was going to play saxophone because it sounds really cool. But the flute is the only instrument I can play because the others all have a mouthpiece," says Caroline, explaining how a mouthpiece might blister her lips and mouth. "Once in a while, I'll get blisters on my fingers and that impacts my playing."
Her favorite new class features engineering, architecture and computer-aided design, and Caroline says she might go to Harper College in Palatine after graduating from high school. She's hoping she might be able to get a driver's license.
Caroline allows herself to dream about a cure.
Efforts like Ahlgrim's help fund research toward that goal. Ahlgrim, who ran cross-country and track in high school, already ran a warm-up 50 miles around their Palatine neighborhood in July, raising $5,000, but he hopes to up that donation in his first official marathon through his debra.salsalabs.org/2021chicagomarathon/p/joeahlgrim fundraising page.
For now, EB requires Caroline's attention around the clock.
"It's tough living with this, but I've gotten used to it," Caroline says, as a sly smile grows. "I'm trying to make it positive. Sometimes it's a negative thing, but it doesn't always have to be negative."