LOS ANGELES, Calif. — Children’s Digestive Health & Nutrition Foundation (CDHNF) and Starlight Children’s Foundation announced the launch of “IBDU: Graduating to Independence” (www.ibdu.org) – a new resource for young adults with Inflammatory Bowel Disease (IBD) who are preparing for college, vocational training, entrance into the workforce or living independently. The site provides answers for older teens and young adults to real life challenges and educational resources.
“Older teens and young adults with IBD may be faced with making a transition and need to adequately prepare to self-manage every day issues, flare ups, medications, insurance issues and communicating with a new team of health care providers,” explained William Balistreri, MD, President of CDHNF. “With so many records to keep, decisions to be made and medical professionals to see, it is easy to become overwhelmed, confused and intimidated when patients are without parents or guardians, away from home or in an unfamiliar setting.”
IBD is a complex disease, especially in the pediatric population. Although at risk of essentially every complication of IBD that adults face, children with IBD are also faced with a number of unique issues. Additionally, there are unique social aspects of IBD that are especially problematic for older teens, college bound patients and young adults who are about to transition to independent living.
“It’s no secret that the teenage years are a particularly challenging time,” said Paula Van Ness, CEO of Starlight Children’s Foundation. “When an older teen or young adult is also struggling with IBD such as ulcerative colitis or Crohn’s Disease, transitioning into independent living can seem overwhelming, especially without a support network. We’ve created IBDU to reassure teens that they are not alone and that there are answers to their questions. The site will guide them to discover their autonomy.”
The website includes a multitude of interactive features such as group discussions in the community, polls, and coming soon will be video stories related to IBD and coping skills.
Specifically, IBDU provides:
– Tips to improve self-management skills through video messages from real patients;
– Guidance for developing an action plan for dealing with IBD during this transitional period;
– Facts about various procedures and lab tests, traveling, different medications, their benefits and side effects; and how to continue to adhere to taking their medicines with their new lifestyles and schedules;
– Information to help them understand insurance and refill prescriptions;
– Guidance for transitioning to an adult gastroenterologist;
– Advice surrounding the importance of developing healthy habits including information about nutrition, alcohol, smoking and sexual activity; and
– Tips for becoming an advocate for their health, learning to ask questions, being assertive and taking responsibility.
IBDU is a complementary program to Starlight’s UC and Crohn’s (www.ucandcrohns.org) online program. Developed as a joint effort of Starlight and the Crohn’s and Colitis Foundation of America, ucandcrohns.org connects teens from coast to coast who have ulcerative colitis or Crohn’s disease and provides them with helpful stories, video clips and tools. IBDU is a natural extension of the UC and Crohn’s website for teens nearing the end of high school and also provides valuable information for professors, employers and parents.
Support for the IBDU website was provided by an unrestricted education grant from UCB, Inc.
About Children’s Digestive Health and Nutrition Foundation
The Children’s Digestive Health and Nutrition Foundation was established in 1998 by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) which represents 1500 pediatric gastroenterologists in the U.S., Canada and Mexico. CDHNF along with NASPHGAN, are the leading physician source of information on pediatric gastrointestinal, liver and nutritional issues. CDHNF is dedicated to improving the care of infants, children and adolescents with digestive disorders by promoting advances in clinical care, research and education. In addition to the pediatric IBD education campaign, CDHNF also provides resources on pediatric eosinophilic esophagitis, reflux and GERD and celiac disease. Additional information on CDHNF and NASPGHAN can be found at www.cdhnf.org and www.naspghan.org.
About Starlight Children’s Foundation
When a child or teenager has a serious medical condition, everyone in the family is affected. For 25 years, Starlight Children’s Foundation has been dedicated to helping seriously ill children and their families cope with their pain, fear and isolation through entertainment, education and family activities. Starlight’s programs have been proven to distract children from their pain, help them better understand and manage their illnesses, and connect families facing similar challenges so that no one feels alone. Through a network of chapters and offices, Starlight provides ongoing support to children, parents and siblings in all U.S. states and Canadian provinces with an array of outpatient, hospital-based and Web offerings. Programs are also delivered internationally through affiliates in Australia, Japan and the United Kingdom. To learn more visit www.starlight.org.