Taking Steps to Stop Crohn’s
By Kevin Madigan | kmadigan@atljewishtimes.com
Jack Spandorfer, a cheerful and polite 14-year-old who lives in East Cobb, will be the Honored Hero at this year’s Take Steps Atlanta walk for the Crohn’s and Colitis Foundation of America.
The May 2 event will raise money for research into Crohn’s, an inflammatory bowel disease that causes swelling in the lining of the digestive tract. Pediatric Crohn’s affects 80,000 children in the United States, 75 percent of whom are descended from Ashkenazi Jews. Crohn’s has no cure.
Altogether, IBD afflicts 1.6 million Americans.
Jack’s journey has been a difficult one. His parents, Philip (better known as Dr. Pip) and Ellen, gradually began to notice that their son didn’t seem quite himself when he was 11.
“He wasn’t growing all that well, hadn’t gained a lot of weight, had no appetite, no energy. We thought maybe he’s just going to be a late bloomer,” said Pip, an emergency pediatrician. “It came on so slowly that you just don’t appreciate it.”
Ellen, a child psychologist, said, “He became the last one to finish dinner, eating slowly, running to the bathroom, shoving food around his plate, sort of like an anorexic.”
An initial test failed to find evidence of the condition, but subsequent ones confirmed in November 2011 that Jack had IBD.
He responded to treatment right away. “Immediately after, the very next day, he was bouncing around the house,” Pip said. “It was striking how much better he was.”
The treatment started with infusions, and now Jack gets a weekly injection of a drug called Humira, which targets the immune system involved with Crohn’s, according to Pip.
But more trouble was ahead. Scar tissue in Jack’s intestines was scheduled for removal, but once inside, the surgeon decided against the procedure.
That’s not what they expected, Pip said. “We tried to be positive. So maybe the medicines are working better than we thought. We appreciated the surgeon opening him up and saying, ‘I’m not going to do this,’ because once you start cutting, it’s really hard to stop. He pulled us out during surgery, which scared us to death. But I respected him for doing that.”
It was tough on Jack. “He was really upset that they did surgery on him for nothing,” Pip said. Not to mention the two-week recovery period that followed.
“Fast-forward a year later, he has to have the surgery again because then he started having symptoms. Same surgeon cut it out, and since then he has felt great,” Pip said.
Just when things were looking up, though, Jack’s little sister, Carly, was diagnosed with the disease as well in November. The CCFA estimates that 20 percent to 30 percent of Crohn’s patients have a relative affected by the disease, and families often share a pattern of illness.
“I think we caught her in time,” Ellen said. “I was hyper-vigilant to all the signs, of course, so … knock on wood. It’s pretty good. We started her on the medication Jack is on very quickly.”
Carly, age 12, is not too fond of the treatment. “I have to get a shot every week. They hurt,” she said. “They sting.”
The family now takes an active role in helping others with Crohn’s, organizing a popular support group that has become a national model and raising more than $35,000 the past two years to help find a cure. More than 40 families regularly participate in the support group.
“Ellen and I have never been people to complain and just sit back,” Pip said. “For any organization we’ve been involved with, if we had a suggestion, instead of complaining, we come up with a solution. That’s the way we do things.”
What does the future hold for Crohn’s sufferers? “As I’ve gotten more involved, I believe without a doubt that they will find a cure for IBD within our lifetime,” Pip said. “There’s no doubt in my mind.”
———————————————————–
What: Seventh annual Takes Steps Atlanta walk for Crohn’s and colitis
Where: International Plaza, Georgia World Congress Center, 285 Andrew Young International Blvd., downtown
When: 2 p.m. Saturday, May 2
Registration and donations: cctakesteps.org
comments