FOR IMMEDIATE RELEASE     News Release
         
Media Contact:
Amy Friedman
Crohn's & Colitis Foundation
800-932-2423
afriedman@ccfa.org

"Diagnosis can be one of the greatest hurdles faced by patients with Crohn's disease and ulcerative colitis, often taking three years or longer following the initial onset of the disease," notes Dr. Balfour Sartor, the Foundation's Chief Medical Advisor. "Even after diagnosis, patients face a long road to treatment, many times fueled by a lack of education about their disease. The Foundation and our new IRC aim to fill that void."

For nearly 40 years, the Foundation has provided educational materials and information about these life-long incurable diseases.  The new IRC, accessed by calling 1-888-MY- GUT-PAIN or visiting www.ccfa.org, further strengthens the Foundation's commitment to superior awareness and educational materials about these diseases, which are often misunderstood and misdiagnosed.

The IRC staffs public health educators with advanced degrees, who are on-call and offering the latest research and new treatment options. The IRC also has tools to help patients choose a gastroenterologist in their area or find their nearest support group.  In addition, the resource serves as an educational starting point for many families, friends, primary care doctors, nurses, and the media, seeking information about the often misdiagnosed and misunderstood diseases.

Callers can also use the system's automated response system to request free brochures and fact sheets, as well as information on patient education and awareness programs in their area.  Plus, the Foundation offers interpretation services in 170 different languages.

The Diagnosis Hurdle
Emily Tolve of Denver, CO suffers with Crohn's disease and can speak to the uncertainty that comes with being accurately diagnosed.  Tolve started having stomach pains in 2005 and thought it was just stress, but it quickly became apparent that something else was wrong.

"When I visited my family doctor I was told that my symptoms could be attributed to a number of digestive disorders, including Crohn's disease or ulcerative colitis, or even cancer," says Tolve. "The word cancer scared me to death and stressed me out even more."

She notes, "I was referred to my gastroenterologist who eventually diagnosed my Crohn's disease. He directed me to the Crohn's and Colitis Foundation, where I found the information I needed to understand what it would be like living with this disease, my treatment options and the support networks available. The expanded version of the Foundation's services is sure to help millions of people like me."

The Need for Education
"Optimal healthcare depends on both a fully educated physician as well as patient," notes Jonathan Braun, M.D., Ph.D., Professor of Pathology and Laboratory Medicine, and Molecular and Medical Pharmacology, at the David Geffen School of Medicine at UCLA.  "Unfortunately, this is not typically the case with diseases like Crohn's disease and ulcerative colitis."
 
Dr. Braun, whose research focuses on the roles of the immune system in resistance and susceptibility to disease of the digestive system, sees a glaring need to increase the awareness of these diseases within both the patient and physician communities – particularly with regard to the expanding treatment options available.

"The therapeutic toolbox for Crohn's and colitis has certainly changed for the better these last ten years," says Dr. Braun.  "However, these new treatments are also more complex to administer, and often have serious side effects associated with their use, requiring greater sophistication by both patient and their physician to consider treatment options."

"Providing meaningful education on living and coping with Crohn's disease and ulcerative colitis is essential in minimizing the effect of these diseases," said Dr. Sartor, "and there's no better source for a patient to begin that education than the Information Resource Center.  We can help those in need find medical help and emotional support in their community, and can be of particular help to those who may not yet know exactly what's wrong, but are experiencing symptoms of these diseases."

About the Information Resource Center
Callers can contact the IRC at 888-MY-GUT-PAIN; information specialists are available live Monday through Friday, 9:00 am–5:00 pm EST.  Inquiries received after business hours will be responded to during the next business day.  The IRC also features a new confidential Live Chat utilizing the Foundation's information specialists, available online at www.ccfa.org. 

About Crohn's Disease and Ulcerative Colitis
Crohn's disease and ulcerative colitis are painful, medically incurable illnesses that attack the digestive system.  Crohn's disease may attack anywhere from the mouth to the anus, while ulcerative colitis inflames only the large intestine (colon).  Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss.  Many patients require hospitalization and surgery.  These illnesses can cause severe complications, including colon cancer in patients with long-term disease.  Some 1.4 million American adults and children suffer from Crohn's disease or ulcerative colitis, with as many as 150,000 under the age of 18.  Most people develop the diseases between the ages of 15 and 35.

About the Crohn's & Colitis Foundation
The Crohn's & Colitis Foundation's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. More than 83 cents of every dollar the Foundation spends goes to mission-critical programs.  The Foundation consistently meets the standards of organizations that monitor charities, including the Better Business Bureau's Wise Giving Alliance (give.org) and the American Institute of Philanthropy (charitywatch.org).  For more information, contact the Foundation at 800-932-2423 or visit www.ccfa.org.

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