Tori’s Story — Crohn’s disease
Thanks to Connecticut Children’s Medical Center, Tori is finished living a double life.
The 17-year-old high school senior was diagnosed with Crohn’s disease when she was five and today makes the trip up to Connecticut Children’s once a month from her Hillsdale, New Jersey , home for treatments. Tori spent most of her high school life hiding her Crohn’s diagnosis from many of her schoolmates.
“I’ve been living a double life because I just didn’t want people to know,” said Tori. “When people found out that I have Crohn’s, they were surprised because they said I don’t look that sick.”
Crohn’s is a chronic disease in which the intestine or bowel becomes inflamed and ulcerated and marked with sores. Tori’s condition took a toll on her participation in school activities, her social life and family events.
“It was always very frustrating for Tori to take part in anything with her family and friends because of the high fevers and constant pain,” said Tori’s mother Eileen who along with Tori’s father Steve, continued to bring Tori to numerous specialists in New York City. She finally had exhausted all the usual medications and her doctors wanted to perform surgery.
“But the surgery would only result in the removal of a portion of her damaged bowel; it wouldn’t be a cure for the Crohn’s,” said Steve Eigner.
But there was another option.
One of Tori’s doctors knew a pediatric gastroenterologist in Connecticut — one with a reputation as being the leader in the field — who might be able to help. That person was Jeffrey Hyams, MD, Connecticut Children’s director of Digestive Diseases, Hepatology and Nutrition. Dr. Hyams and his team treat about 10,000 children a year with inflammatory bowel disease including Crohn’s and ulcerative colitis.
Dr. Hyams was the lead investigator of a study involving Tysabri a medicine that is usually used to treat multiple sclerosis. The FDA recently approved its use for treating adults with Crohn’s and Dr. Hyams was leading a clinical trial.
Tysabri is an antibody that affects the actions of the body’s immune system. The antibodies are made to target and destroy only certain cells in the body while helping to protect healthy cells from damage. But there are some risks with its use that Dr. Hyams addressed with Tori and her parents.
“The most serious side effect of Tysabri is that it has been known to cause a viral infection of the brain,’ said Dr. Hyams. “The risk is much higher if the patient has a weak immune system.”
But Tori’s condition continued to cripple her body and spirit, and the painful surgery was just not an option. “Tori was very involved in the decision and we chose to go with administering the Tysabri,” said Steve. “She is carefully monitored for any side effects and thankfully there haven’t been any so far.” Since 2009, Tori and her family have been traveling to Connecticut Children’s for the treatments. “Dr. Hyams is very reassuring, and he and his staff follow through on all our requests,” said Eileen. And what a difference a year can make for Tori.
“She looks like a completely different girl than a year ago,” said Dr. Hyams who beams whenever he discusses Tori’s progress. “I feel like myself again,” said Tori, who was able to attend her junior prom last year thanks to her treatment.
An avid basketball and New York Knicks fan, Tori is the official scorekeeper for her school’s basketball team and she now has a part-time job at a men’s clothing store. She has begun applying to colleges and said she is not sure what she wants her major to be, although she hints that it’s something that may involve writing. As part of her applications, she’s written an extensive essay on her struggle with Crohn’s in which she chronicles her life as a homeschooled student in the eighth grade. She also discussed her trip to Los Angeles to visit the cast of one of her favorite television shows, “Grey’s Anatomy”, which was provided to her by the Make A Wish Foundation.
“My husband’s mother is a Holocaust survivor and now we have another survivor in the family in Tori,” said Eileen. “She is such a different child than a year ago. Thanks to Dr. Hyams, we have our girl back. She has so much energy and enthusiasm for the first time in her high school years and she will be starting college next year.” Although there is no cure for Crohn’s disease, Tori has a new view of life that holds endless possibilities for her.
“I’m still smiling,” Tori said. “Maybe I should be angry, but I’m just not the type of person to hold a grudge.”