Out of the estimated 1 million people in the United States diagnosed with Crohn’s disease or ulcerative colitis, American Jews of European descent are four to five times more likely to develop the symptoms collectively known as irritable bowel syndrome than the general population.
According to Cathy Michalec of the Northwest Chapter of the Crohn’s and Colitis Foundation of America, only 30 years ago researchers thought that only the Jewish population had the disease and didn’t even check other groups. The CCFA was established in New York City in 1967 to research the origins of the disease.
But one of the most disturbing effects of this syndrome is the embarrassment and the sense of shame that sufferers feel that often prevents them from sharing their distress with some of their closest friends.
“There are 30,000 people in Washington state who are diagnosed with the disease,” said Michalec. “Crohn’s disease is the inflammation of the small and large intestines. We don’t know why it develops but a team of researchers in Chicago have just identified the IBD gene for Crohn’s disease.”
Crohn’s disease is found more often in urban environments rather than in rural ones and it is more frequently diagnosed in northern climates than in southern climates.
Crohn’s disease and IBD are also considered to be conditions that afflict mostly Caucasians, although the incidence of occurrence is steadily rising among the African-American population. There does not seem to be any difference in the incidence of occurrence between women or men.
“This is a disease where the food you eat does not get absorbed,” said Michalec. “Patients suffer from extreme weight loss, persistent diarrhea, extreme abdominal pain, fevers, joint pain, inflammations of the skin and the eyes and even ulcers on the skin. Onset of the disease usually occurs between the ages of 18 and 30 and then again after the age of 50 there is a spurt in diagnosis.”
According to Michalec, there is strong support in the organization from the Jewish community.
“Jewish people understand the value of research and we have many Jewish people as members,” she said, adding that in October, when some of the new board members will join the local board, six out of the 20 board members will be Jewish. “I think as a culture, Jewish people are aware of it in their community, they put their money where their mouth is and they do service. I think it is part of their culture.”
Board member Dr. Richard Stein, a gastroenterologist with a practice in Burien, says he got involved with the organization because so many of his patients suffer from Crohn’s disease or one of the related illnesses. A whole team from his office participated in the “You Gotta Have Guts” PaceSetter 5K fund-raiser at Magnuson Park earlier this month.
“It’s not a coincidence that there are so many Jews on the board. It hits people we know and the people we are close to,” said Stein, who has been involved with the organization for about 12 years.
Although he doesn’t have a lot of Jewish patients in his practice, Stein said he is constantly getting calls from friends or relatives asking for advice about dealing with Crohn’s. His patients have benefited from the organization’s research and the printed information CCFA provides.
Stein, whose family belongs to Temple B’nai Torah in Bellevue, commented on how much progress has been made in treatment of Crohn’s over the past decade and part of that is thanks to CCFA. “It really is a good organization. The people are extremely dedicated,” he added.
The CCFA is the only nonprofit that is raising money in the United States for research of this disease. This year they raised $22 million and that was a record-setting sum for them.
“My expectation is that in five years we will double that to $44 million collectively in the U.S.,” said Michalec, referring to the combined efforts of all the 55 chapters in the country. “We hold our annual ‘You Gotta Have Guts’ PaceSetter 5K Race, which was at Magnuson Park this year, and our membership luncheon raised $64,000. We accept private donations and we have a couple of bowl-a-thons. We provide education, support and conferences about the disease.”
CCFA is a nonprofit, voluntary health organization that not only raises funds for clinical research and education but also offers supportive services for patients, their families and their friends.
“Maybe there’s an ability to recognize and provide clues to the disease process,” said Michalec. “We still have to figure out if there is an environmental trigger as well. Some people who are diagnosed may already have a weakened immune system. But the research shows that genetic disposition is 20 percent if someone in your family has it.”
The research also shows that if that relative is a sibling, the likelihood of developing the disease shoots up to 30 percent. That is a high probability when the potential of any of the diseases in IBD can result in death.
“People can die because you could lose 30 pounds in a month and it weakens your immune system,” adds Michalec. “The incidence of colon cancer is also higher. If you have scarring from ulcers and inflammation, bacteria can leak out (of your intestines) and cause death by infection.”
According to Michalec, some people have it under control with medication or surgery, but while medications control most of the symptoms, the only “cure” is surgical removal of the colon.
“Some people have it under control with medication or surgery but that doesn’t mean that you couldn’t have a flare up,” said Michalec. “Medication just controls the symptoms.”
Dr. Stein adds, “People, whether they know it or not, really do know a lot of people with the disease. They don’t talk about it.”
To receive more information from the northwest chapter, call 206-574-0698.