HORSHAM, Pa.—Actor and program spokesperson James Van Der Beek, formerly of the television programs "Dawson's Creek" and "Mercy," has witnessed firsthand the effect ulcerative colitis (UC) can have on a loved one. "My mother initially kept her UC diagnosis a secret from most of our family because she was embarrassed and felt uncomfortable talking about it," said Van Der Beek. "Through my involvement in the Voices of UC program, I hope to raise awareness of UC and encourage those who suffer in silence, like my mom, to speak up about their condition with their families and friends, who may provide support, and most important, their physicians."
People living with UC say more understanding is needed about this chronic inflammatory bowel disease that affects approximately 500,000 Americans. Data released this week from Voices of UC (voicesofuc.com)—an initiative developed to educate and raise awareness of the condition—captures the dual perspectives of people who live with the condition and the physicians who treat it. These new survey findings illustrate the physical and emotional toll of the disease, as well as a disconnect in the way patients and physicians discuss and manage the condition.
The Voices of UC survey was conducted by Manhattan Research and is a collaborative effort between Centocor Ortho Biotech Inc. and the Digestive Disease National Coalition (DDNC), a non-profit advocacy organization comprised of the major national voluntary and professional societies concerned with the many diseases of the digestive tract. The 2010 Voices of UC initiative is a follow-up to a 2005 survey to look at what has changed and what struggles remain for people living with UC. While 10 percent fewer patients were hospitalized with UC-related issues in 2010, some aspects of living with UC have not changed. In fact, a full one-third of patients still get an incorrect diagnosis before a doctor correctly identifies their condition as UC, and getting the right diagnosis continues to take well over a year.
In addition to being uncomfortable discussing their condition with friends and family, patients may not be fully communicating the effect of the disease to their physicians. In fact, nearly half of patients surveyed experience three or more UC flares each year in contrast to physicians who believe less than a quarter do.
"While the symptoms of UC may be challenging for patients to talk about, it's critical that they share these details with their physician to get a timely and accurate diagnosis and make sure their condition is treated appropriately," said James DeGerome, MD, president of the DDNC. "The results of the Voices of UC surveys illustrate the importance of active and open communication, especially between a person with UC and their physician."
The surveys also suggest that patients believe their UC is under control when it may not be.