Crohn's disease is a chronic, progressive and debilitating inflammatory bowel disease that results in an inflammation of the gastrointestinal (GI) tract. Most Americans living with Crohn's disease often feel isolated and limit social activities because of the constant pain and fatigue they experience, as well as the fear of an immediate need to find a public restroom. Often the embarrassing nature of the disease forces those afflicted to battle Crohn's disease alone, as people find it difficult to share their experience with others.
"This is an exciting and much-needed resource for the Crohn's community," noted Marla Dubinsky, MD, contributor to the Crohn'sAdvocate magazine and Director of the Pediatric Inflammatory Bowel Disease Center at Cedars-Sinai Medical Center in Los Angeles, Calif. "Crohn'sAdvocate is a program developed to strip away the stigma of secrecy often inherent with diagnosis and open doors to communicating with others about the condition."
The program is comprised of four key components:
- Crohn'sAdvocate Team: At the heart of the program is an inspiring team of advocates. They are empowered individuals who share their personal journeys with others living with Crohn's.
- Crohn'sAdvocate Magazine: A free, quarterly publication chronicles the journeys of people on the frontlines of Crohn's disease: those living with Crohn's, their healthcare providers, family and friends.
- Crohn'sAdvocate Forums: Local educational symposiums across the country connect people living with Crohn's disease with an Advocate who reveals his/her personal journey with the disease, a leading gastroenterology expert and supportive materials.
- CrohnsAdvocate.com: A dynamic Web site provides informative news about the program, an opportunity to preview magazine articles and subscribe to the publication and venue-specific information for the local forums.
- The cornerstone of the program is the magazine, entitled Crohn'sAdvocate. Now in its second issue, the educational centerpiece has a youthful, energetic design that aims to provide readers with a moving, informative and fun reading experience, unique from any other publication dedicated to the disease. Thirteen contributors connected to Crohn's, such as Los Angeles-based comedian Ben Morrison and former National Hockey League (NHL) player Kevin Dineen, have ensured that this issue, entitled "Crohn's at a Crossroads," is filled with practical information on everyday living, inspirational patient-centric stories about life transitions, as well as useful news and insights for people with Crohn's, especially those making a life change. A pilot issue was published in April 2009. The magazine is available through doctors' offices nationwide and online at CrohnsAdvocate.com.
"When I was first diagnosed with Crohn's 23 years ago, I was worried about how my life would change, what people would think and how it would affect my career," said Dineen, who currently coaches the American Hockey League's Portland Pirates. "I have found that it is so helpful to meet others who are going through what you are because they understand- that's why it is important to have a program like this."
To connect people who often feel isolated, the Crohn'sAdvocate team is traveling across the country to eight cities this fall speaking about their personal journeys with the disease. Each Advocate is paired with a leading gastroenterologist who provides an overview of the disease and ways to manage it. The Crohn'sAdvocate Forums were piloted in the spring of 2009 and have already connected more than 100 people affected by Crohn's disease.
The Crohn'sAdvocate program was created and is supported by biopharmaceutical company UCB. The program was created in response to the needs expressed by the Crohn's community including a stronger connection with others, information and support related to health and well-being and education and encouragement to address disease management.
To download an issue of Crohn'sAdvocate magazine, learn about a Crohn'sAdvocate Forum event, or view stories and pictures of those involved in the program, go to CrohnsAdvocate.com.
About UCB
UCB, Brussels, Belgium (www.ucb.com) is a biopharmaceutical company dedicated to the research, development and commercialization of innovative medicines with a focus on the fields of central nervous system and immunology disorders. Employing approximately 10,000 people in over 40 countries, UCB produced revenue of 3.6 billion euro in 2008. UCB is listed on Euronext Brussels (Symbol: UCB) . U.S. headquarters is located in Atlanta, Ga.
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