Seventeen-year-old Eliot Drieband explains what it's like to have Crohn's disease − a type of inflammatory bowel disease − in the same matter-of-fact way she describes preparing for an advanced placement exam, working on the school newspaper, starting an organ donor awareness club for teens and being a peer counselor for other kids facing chronic, life-altering illnesses.
"The disease is part of my life, just like my hair color, but it's not 'me'," she says, acknowledging that it's easier dealing with it now than when she and her family learned the diagnosis five years ago. "It's nothing to be afraid of. I've chosen not to hide it; it's awkward but it doesn't limit my abilities," said the Pacific Palisades, CA, high school senior.
According to Drieband's physician, Marla C. Dubinsky, M.D., medical director of the Pediatric Inflammatory Bowel Disease Center at Cedars-Sinai Medical Center, young people who have inflammatory bowel disease have so much to cope with, but learn not to let the disease derail their lives. She says about her patients, "They're amazing."
Dubinsky, a pediatric gastroenterologist, and her colleagues at Cedars-Sinai currently treat more than 400 children from 2 to 21 years of age with inflammatory bowel disease (IBD).
Crohn's disease and ulcerative colitis are two different types of inflammatory bowel diseases that affect the digestive system.
Symptoms include diarrhea, sometimes severe enough to require frequent trips to the bathroom (up to 20 or more times a day); significant abdominal pain, bloody stool, blocked bowels, fever, extreme weight loss and anemia. Treatment includes drug therapy, education, nutritional and psychosocial counseling, and surgery.
Both forms of IBD are complex and can be difficult to diagnose. According to the Crohn's and Colitis Foundation of America, IBD can strike at any age but occurs most often in young people between the ages of 15 and 35.
Since IBD tends to run in families, scientists know genes play a role in its etiology, but have not determined the exact cause of the disease. Some people have long periods of remission, but there is no cure.
Once every 10 weeks, Drieband receives a biologic therapy called infliximab (trade name Remicadeģ at the pediatric infusion center at Cedars-Sinai.
Infliximab, Dubinsky explained, is used for patients who have not responded adequately to standard therapies such as anti-inflammatory drugs, corticosteroids, immune system suppressors and antibiotics.
Biologic agents selectively target key inflammatory processes involved in the development of a disease - in this case infliximab blocks the body's inflammation response. Its side-effects can include upper respiratory infections and other potentially serious reactions.
The Al and Heidi Azus Foundation's Pediatric Infusion Center opened in early April within the Cedars-Sinai Children's Health Center. The colorful two-room suite is furnished with X-Boxes, flat screen televisions, DVD players and comfortable reclining chairs - all designed to lessen the emotional stress young patients sometimes experience during the two to three hours required to administer intravenous treatments.
The center is one of only a few pediatric IBD centers in the North America that conducts research activities and provides education and treatment all at one campus.
Dubinsky explained that Cedars-Sinai wants to ensure that patients referred to the center have access to the most advanced technologies and therapies as soon as they are shown to be safe and effective, and yet it is also careful and conservative in medical treatment for young patients who have IBD.
"We choose patients to receive these families of biological therapies very carefully. The risk/benefit ratio of these very powerful medications clearly needs to favor a successful therapeutic outcome," said Dubinsky.
Drieband adds that, "the new center is wonderful. It's really cozy and more private than the adult infusion center where I used to go. I can watch a movie ... but I usually fall asleep."