Children and teens with chronic illnesses must deal with the social and emotional impact of their illnesses as well as the physical symptoms. Youngsters with IBD suffer even more stress because they have a disease that's rarely discussed openly among the public — a disease surrounded by misunderstanding, shame and denial. IBD sufferers bear the consequences in silence, often unaware that support is available.
The following list provides information and personal support resources that can help children and families cope with life with IBD. We hope you will find it helpful.
CCFA is a non-profit, voluntary organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. CCFA sponsors basic and clinical research, offers educational programs for patients and healthcare professionals and provides support services to help people cope. For more information about CCFA services, contact the association at 215-396-9100.
The Fun Club is for kids and teens who have Crohn's disease or ulcerative colitis. It is a program developed and supported by volunteers of the Philadelphia/Delaware Valley Chapter of the CCFA. Our goal is to have fun activities so that kids can meet each other and have a great time. In addition, the events will provide an opportunity for parents to meet and to support each other. If you are interested in serving on the committee, contact Jan Cawthorne at 610-630-0359.
The CCFA sponsors a parent support group, which is held at The Children's Hospital of Philadelphia. The group deals with the emotional challenges of living with Crohn's disease and ulcerative colitis. For more information, please contact CCFA at 215-396-9100.
"Life Uncommon" is a 10-minute video about children and adolescents suffering from IBD and the professionals who care for them at The Children's Hospital of Philadelphia.
Contact the Center for Pediatric Inflammatory Bowel Disease.