Pitch Perfect

Successful Treatment for Crohn’s Disease Let a Young New Yorker Pursue Her Broadway Dreams

Analise Scarpaci had just turned 13 when she made her Broadway debut in the chorus of A Christmas Story: The Musical during the 2012 holiday season. Performing before packed houses on the venerable stage of the Lunt-Fontanne Theatre would be a thrill for any young actor—but for Scarpaci, it marked a milestone not only for her career but for her long-term health.

The Staten Island native had been auditioning seriously since age 10, when she signed with a professional manager; just a week later, she was struck by the first symptoms of inflammatory bowel disease (IBD) while away at summer camp. Her condition deteriorated: she’d have to go to the bathroom more than a dozen times per day, she suffered from abdominal pain and bloody diarrhea, and her growth was markedly stunted. A few months shy of her 11th birthday, she stood four-foot-two and weighed just 52 pounds. “I was extremely thin and small—I was so tiny, I probably looked about seven, and I was really frail looking,” says Scarpaci, now an 18-year-old freshman at Pace University. “I was so weak because I was losing all this blood. It was hard to go out on auditions and keep my energy up.”

Scarpaci’s parents took her to a physician in Brooklyn, who diagnosed her with a type of IBD called ulcerative colitis. But when she didn’t improve significantly after a year of treatment, they came to Dr. Robbyn Sockolow, professor of clinical pediatrics at Weill Cornell Medicine, for a second opinion. Chief of the Division of Pediatric Gastroenterology and Nutrition at NewYork-Presbyterian/Weill Cornell Medical Center and associate attending physician at its Komansky Children’s Hospital, Dr. Sockolow is an expert in treating IBD and other gastrointestinal disorders in children. (Her clinical innovations include creating the “Jellybean Test,” a method of making wireless capsule endoscopies more kid-friendly by having young patients swallow candies to get them accustomed to the camera, which is housed in a capsule the size of a jellybean.) As it happens, Dr. Sockolow’s own daughter had been a child actor, so she was familiar with the profession’s demands. “Analise was very tired—she had been going to the bathroom frequently and having abdominal pain—but you could tell that she was an incredibly lively young lady,” Dr. Sockolow recalls of their first meeting. “She was interested in pursuing acting, singing and dancing, and her parents asked me whether she would be able to, and I didn’t see any reason why she couldn’t. My job was to make her feel better and get her in remission—to get her to the point where her dreams could come true.”

Dr. Sockolow suspected that Scarpaci had been misdiagnosed, since her stunted growth didn’t jibe with ulcerative colitis (UC); after additional testing she diagnosed her with Crohn’s disease, a different type of IBD. In both diseases, the mucosa—the lining of the gastrointestinal tract—becomes inflamed, leading to many of the symptoms that Scarpaci suffered. But there are important differences between the two, such as the fact that while UC is limited to the colon and generally involves more superficial inflammation, Crohn’s can affect the entire digestive tract and have more severe consequences for overall health. Indeed, by the time Scarpaci saw Dr. Sockolow, she had developed ulcers not only throughout her colon, but her stomach and esophagus as well. Once Dr. Sockolow identified Crohn’s as the culprit, she put Scarpaci on a drug called infliximab (Remicade), which had been approved by the FDA for adults in the 90s and for children in the mid-aughts. “It has changed the landscape of treatment in patients with Crohn’s disease,” says Dr. Sockolow, who has served as a paid member of a speakers’ bureau for Janssen Pharmaceutical Company, which makes Remicade. “Where before we had medications that could make you feel better or stop some of the inflammation, infliximab is revolutionary in that it can provide excellent mucosal healing in some patients. But as important, in children it can really help with growth impairment—so Analise was a perfect candidate for it.”

In addition to receiving the drug through intravenous infusion roughly every seven weeks, Scarpaci had to radically change her diet, cutting out all gluten and dairy. “That was the most difficult part, because back then restaurants didn’t have all the gluten-free options, like pasta and pizza, that they do now,” she says. “I’d get upset because when my parents would want to eat out I couldn’t go with them. And they’d end up staying home, but I didn’t want to hold them back.” In less than a year, though, all of Scarpaci’s symptoms abated, and by the time she debuted in A Christmas Story she was in remission. The following year she was cast in the Broadway hit Matilda, appearing in it for 18 months. “It filled my heart with joy,” Dr. Sockolow says of seeing her patient perform in both shows. “I knew she was incredibly talented, but to witness it—to know how sick she was and then see how brilliant she was on Broadway—really brought tears to my eyes.”

Scarpaci has kept performing, recently starting a career as a singer-songwriter. Now a musical theater major at Pace, she’s active in the Crohn’s & Colitis Foundation, which named her the pediatric honoree of its Staten Island benefit walk last summer; Scarpaci, who sang the National Anthem at the event, raised more than $9,000 through her walking group, Broadway for Bellies. “I owe everything to Dr. Sockolow and her team,” she says. “They’re the most amazing people and I have developed relationships with every one of them. As soon as I met her we had this instant connection. When I told her I wanted to be an actress she said, ‘Don’t let this stop you,’ and I never did. That has always stuck with me.”

Since Crohn’s disease currently has no cure, Scarpaci will have to maintain a restricted diet and have regular infusions for the foreseeable future. But those trips to the hospital—during which Dr. Sockolow checks on her medical progress—also offer the chance to catch up with the physician who has practically become family. “When I see her for the infusions, I’m not just having a visit with a patient, I’m having a day with the girls, if you will,” Dr. Sockolow says. “It takes five minutes for us to go through the medical questions, and the rest is about school, auditions, getting into college, family holidays, funny stories, girlie things like clothes. All we do is laugh.” Scarpaci’s recovery, Dr. Sockolow adds, is the kind of outcome that every physician hopes for. “You wish that you could take every patient who ever walked into your office and bring them back to a state of health—and not only that, but to the point that they only think about IBD on the day you see them,” she says. “The only time that Analise has to be reminded she has Crohn’s disease is when she comes in for her infusion. Other than that, she’s as healthy, happy and free as any young person would be.”

This story will appear in Weill Cornell Medicine, Vol. 17. No. 1

— Beth Saulnier

Weill Cornell Medicine
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