Seventeen-year-old Eliot Drieband explains what its like to have Crohns 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 its not me, she says, acknowledging that its easier dealing with it now than when she and her family learned the diagnosis five years ago. Its nothing to be afraid of. Ive chosen not to hide it; its awkward but it doesnt limit my abilities, said the Pacific Palisades, CA, high school senior.
According to Driebands 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, Theyre 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).
Crohns 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 Crohns and Colitis Foundation of America, IBD can strike at any age but occurs most often in young people between the ages o
f 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 Remicade 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 bodys inflammation response. Its side-effects can include upper respiratory infections and other potentially serious reactions.
The Al and Heidi Azus Foundations Pediatric Infusion Center opened in early April within the Cedars-Sinai Childrens 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 favo
r a successful therapeutic outcome, said Dubinsky.
Drieband adds that, the new center is wonderful. Its 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.
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