TORONTO — Marilyn Finkelstein and her late husband, Albert, were desperate for information about Crohn’s disease when their son David was diagnosed 36 years ago.
Marilyn Finkelstein
“After many trips to the doctors and numerous hospital visits,” Finkelstein said, “no one, including my family doctor, could figure out what was wrong.”
She found herself at the University of Toronto medical school library, where there was only one book with only one paragraph on Crohn’s disease. The Finkelsteins then spearheaded an initiative that subsequently resulted in the formation of what is now known as the Crohn’s and Colitis Foundation of Canada (CCFC), a volunteer–based not-for-profit medical research foundation.
“That day in 1974, my life was changed forever,” she said. Her focus then, as it is today, was “to help find a cure.”
Her second son, Gary, was diagnosed with Crohn’s disease 10 years later.
Inflammatory bowel disease (IBD) includes Crohn’s disease and ulcerative colitis, two similar yet distinct conditions that cause intestinal tissue to become inflamed, form sores and bleed easily.
Symptoms include abdominal pain, cramps, fatigue and diarrhea. The CCFC is launching a Can’t Wait iPhone, Android and web application that will help people find the public washroom closest to them. A web-based version of Can’t Wait is online at www.cantwait.ca.
Statistics from CCFC indicate that more than 200,000 Canadians, an estimated one in 160, live with IBD. Most people are diagnosed before the age of 30.
The foundation notes that there is no cure and there is little understanding of the pain, chronic suffering and isolation IBD patients cope with every day of their lives.
Finkelstein, who speaks from coast to coast on behalf of the foundation, said that to help reduce the feeling of isolation felt by people living with IBD, there’s a need to raise public awareness of this chronic disease.
“People living with IBD too often face their condition in silence,” she said. “There are some who are afraid to venture away from home, cutting off the possibility of many great experiences.”
With Crohn’s disease, inflammation can occur anywhere in the gastrointestinal tract but is usually present in the lower part of the small intestine and the colon.
Ulcerative colitis only affects portions of the large intestine. It typically inflames only the innermost lining of the bowel tissue.
Both are lifelong diseases that can flare up at unpredictable times. No one is sure what causes a person to go into remission or what launches an acute episode.
There are medications that can improve symptoms, decrease inflammation and lead to a better quality of life. Public awareness and more sophisticated diagnostic equipment also make the conditions easier to deal with for some.
“The Foundation will continue to pursue its goal of finding a cure for IBD,” Finkelstein said. “We know the cure is more than a dream – one day it will be a reality.
“Medical research is simply the best hope for finding a cure. My dream is to be present at the closing of this foundation. They are getting closer to unraveling the cause.”
For more information about IBD call 1-800-357-1479. or go to www.cccfc.ca
