LOS ANGELES, Calif. — For young adults with Crohn’s disease or ulcerative colitis, coping with their illness is a life-long struggle. Today Starlight Children’s Foundation and the Crohn’s & Colitis Foundation announced the unveiling of their redesigned Web site, UCandCrohns.org, originally designed in 2006 to help young IBD patients cope with their condition. New features – such as frequently asked questions and Ask the Expert – have been created to help young adults living with inflammatory bowel disease (IBD) manage their life-long digestive disease; connect with others facing similar challenges; communicate with health care providers, family, teachers and peers; administer medication and other treatments; manage their symptoms through diet and lifestyle changes; and access resources that make understanding medical jargon much easier.
“Since its initial launch in 2006, UCandCrohns.org has gained significant popularity among teens living with Crohn’s disease and ulcerative colitis and has become a well-known and valued resource,” says Kimberly Frederick, Vice President of Patient & Professional Services for the Crohn’s & Colitis Foundation. “The site has been carefully redesigned to appeal to the needs of today’s younger generation when it comes to dynamically accessing information online and connecting with others in similar situations.”
The new rich and interactive site features, complemented by a fresh energetic graphic design and easy-to-navigate site layout, include:
* My Story – A place for teens to submit videos and stories about the ups-and-downs of life with IBD, and to see what others have sent in about their experiences.
* Tips and Tidbits – Provides a wealth of IBD survival skills, including how to handle long school absences, telling friends about the condition, what makes a medical procedure more bearable, stress management tools, and more practical wisdom from other teens who have been there.
* Ask an Expert – Features Q&A about everything from medications and procedures to foods, fitness, and lifestyle, plus a tool that allows teens to submit new questions.
“Feeling as if everything they do is centered around the bathroom and accompanied by pain, extended absences from school, nausea, fatigue, weight loss, surgeries, and medications and their side effects, life for teens with IBD can be can be isolating and overwhelming,” said Paula Van Ness, CEO of Starlight. “We are confident that the updated UCandCrohns.org will help young adult Crohn’s and colitis patients better cope with the disease and come to grips with their feelings about it.”
Although there are 1.4 million Americans living with IBD, including more than 150,000 children under 18, Crohn’s and colitis sufferers, especially young adults, feel isolated and alone. Children with IBD are comforted knowing that others can relate to their struggles, which is helpful in relieving emotional pain of the disease. The UC and Crohn’s site connects sick children with the reality that there is hope and a future for every single one of them.
UCandCrohns.org has been made possible through a generous gift from CCFA supporter and National Trustee, Jeff Margolis and his wife Deborah.
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 the large intestine (colon) only. Symptoms may include persistent diarrhea, abdominal pain or cramps, 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 Americans suffer from Crohn’s disease or ulcerative colitis, including 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 of America’s (CCFA) mission is to cure and prevent Crohn’s disease and ulcerative colitis through research, and to improve the quality of life of children and adults affected by these digestive diseases through education and support. More than 81 cents of every dollar the Foundation spends goes to mission-critical programs. CCFA 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 CCFA at 800-932-2423 or visit www.ccfa.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 .
