Palatine student pushes through pain in case of skin disorder in search of the positive

The painful Caroline Provost endures a nocturnal 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 literally got more skin in the game, which means more itching and more pain.

“I’m probably used to it,” Caroline says gently, sitting on the patio outside her family’s home in the Palatine, explaining what it’s 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, and that’s how she does well on her goal Friday night to play with her marching bandmates on the football field when her Palatine High School Pirates beat the Barrington Broncos.

“I was nervous at first, but when I saw everyone out there, it was really fun and exciting,” Caroline says. “The audience and the band had a great energy. I’m really glad I pushed myself to do that.”


Friday night colder temperatures allowed Caroline Provost to play with the marching band Palatine High School for the first time.  A rare skin condition causes her skin to blister in the heat.

Friday night colder temperatures allowed Caroline Provost to play with the marching band Palatine High School for the first time. A rare skin condition causes her skin to blister in the heat.
Greetings from the Provost family

Almost everything she does requires self-motivation.

“Of course I wish I could look like any other child,” says Caroline, a sophomore whose condition causes her hair to fall out, her nails and toenails to become deformed or missing, and blisters to appear all over her body at least. provocation.

EB results in a lack of a protein that binds the epidermis – the outer layer of skin – to the dermis layer below. Just as grass without roots easily tears off the soil, skin without the 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 these wraps in place, making it less likely that she will tear off a piece of skin while moving during the day or sleeping at night.

“She’s never had her whole body without a bandage – ever,” says mother Adrienne Provost, who does most of the nightly routine of gently removing the bandages before a sponge bath. New boils are launched, a special net is applied to deep wounds, and soothing coconut oil is foamed 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 performs the duty once or twice a week.


With fragile skin that easily tears and blisters, Caroline Provost from Palatine needs her mother, Adrienne Provost, to remove her special bandages every night, give her a sponge bath, treat wounds and wrap her body in a special foam bandage and compression sleeves.

With fragile skin that easily tears and blisters, Caroline Provost from Palatine needs her mother, Adrienne Provost, to remove her special bandages every night, give her a sponge bath, treat wounds and wrap her body in a special foam bandage and compression sleeves.
– Brian Hill | Employee photographer

“I play on my phone or iPad or listen to music,” Caroline says, admitting that the pain sometimes makes her shout a swear word. “Torso has always been my least favorite.”

There are four basic types of EB and almost two dozen subtypes. Caroline’s form is known as junctional non-Herlitz, which can affect one in a million people, according to the National Institutes of Health.

Her EB is less severe than some forms and generally does not shorten a patient’s life. Besides damaging her skin, hair and nails, it can make her teeth soft and crumbling.

Eleven of her baby teeth had to be removed, and her permanent cheek teeth were closed in stainless steel by her dentist, Mark Cannon, founder of the Associated Dental Specialists of Long Grove, professor at Northwestern’s Feinberg School of Medicine and research coordinator of the pediatric dental program at Ann and Robert Lurie Children’s Hospital in Chicago.

Caroline was born on August 22, 2005 at Northwest Community Hospital in Arlington Heights. When doctors saw the white bones exposed to her left leg because so much tissue and skin had been torn away, she was transferred to what is now Lurie Children’s Hospital. Because EB also affects mucous membranes and can cause blisters in the mouth, throat, esophagus, upper respiratory tract, stomach, intestines, urinary tract and other internal organs, many EB babies die from complications with breathing, nutrition and hydration or infections.

With education and support from 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 elementary school, Patrick even carried Caroline’s beloved backpack with the One Direction boy band, which could have led to a bit of teasing.


After 20-year-old student at Northern Illinois University Joe Ahlgrim, on the right, learned about the rare skin disease of his Palatine neighbor, Caroline Provost, 16, he raised $ 5,000 by running 50 miles in July and hopes to be able to add it to run in the Bank of America Chicago Marathon today.

After 20-year-old student at Northern Illinois University Joe Ahlgrim, on the right, learned about the rare skin disease of his Palatine neighbor, Caroline Provost, 16, he raised $ 5,000 by running 50 miles in July and hopes to be able to add it to run in the Bank of America Chicago Marathon today.
Greetings from the Provost family

But Caroline says she has 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 student at Northern Illinois University 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 via Zoom for almost the entire past school year made life easier for Caroline, whose grades qualified her for academic honors. But she says, “It’s good to be in school. It’s more normal and I see people.”

Orthopedic helper Aaron Morris and physiotherapist Tracy Tziortzis help Caroline with some tasks, including maneuvering through the crowded hallways.


Moving around Palatine High School is easier for Caroline Provost in her battery-powered wheelchair.  The 16-year-old sophomore has a rare skin condition that causes blisters on her body and can affect her feet if she walks too much.

Moving around Palatine High School is easier for Caroline Provost in her battery-powered wheelchair. The 16-year-old sophomore has a rare skin condition that causes blisters on her body and can affect her feet if she walks too much.
Greetings from the Provost family

“If I walk too much, my feet can easily blister,” says Caroline, who had been pushed in a wheelchair until she was given an electric wheelchair. “The power I can move on my own, so there is that independence. I’m going to go where I want to go. I like the freedom.”

She has an individualized education plan that gives her more time and other accommodations because of her disability, but Caroline often does not use them. When a teacher said Caroline did not need to do a class presentation, she told her mother, “He should not underestimate me,” and made 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 the flute dove with her uncle Hank at home and rehearsed with the marching band after school, but Friday was the first time the conditions were right for her to perform at a game.

“I wanted to play the saxophone because it sounds really cool. But the flute is the only instrument I can play because the others all have a mouthpiece,” Caroline says, explaining how a mouthpiece can blow her lips and mouth. “Every once in a while I get blisters on my fingers and it affects my game.”


Caroline Provost plays the flute in Palatine High School's marching band.

Caroline Provost plays the flute in Palatine High School’s marching band.
– Brian Hill | Employee photographer

Her favorite new class offers engineering, architecture, and computer-aided design, and Caroline says she might go to Harper College in Palatine after graduating from high school. She hopes she might be able to get a driver’s license.

Caroline allows herself to dream of a cure.

Efforts like Ahlgrim’s help fund research toward this goal. Ahlgrim, who ran cross-country and track in high school, already ran a warm-up 50 miles around their Palatine neighborhood in July and raised $ 5,000, but he hopes to increase that donation in his first official marathon through his debra.salsalabs.org/2021chicagomarathon/p/joeahlgrim fundraising site.

For now, EB requires Caroline’s attention around the clock.

“It’s hard to live with this, but I’ve gotten used to it,” Caroline says, as a beautiful smile grows. “I try to do it positively. Sometimes it’s a negative thing, but it doesn’t always have to be negative.”

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