What is lifewithcrohnscolitis.org/?
lifewithcrohnscolitis.org/ is a dedicated patient-to-patient support community for families affected by Crohns or Ulcerative Colitis. lifewithcrohnscolitis.org/is powered by BensFriends.org3, patient support communities for rare diseases, and is run by volunteer moderators who have been affected Crohns or Ulcerative Colitis
Who can join lifewithcrohnscolitis.org?
If your family has been affected by Crohns or Ulcerative Colitis, consider lifewithcrohnscolitis.org/your second home. lifewithcrohnscolitis.org/, as well as the rest of BensFriends.org patient communities, is free for members to join.
What is Crohns or Ulcerative Colitis?
Crohn’s disease is an inflammatory bowel disease (IBD). It causes inflammation of the lining of your digestive tract, which can lead to abdominal pain, severe diarrhea and even malnutrition. Inflammation caused by Crohn’s disease can involve different areas of the digestive tract in different people. The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn’s disease can be both painful and debilitating, and sometimes may lead to life-threatening complications.
Ulcerative colitis (UC) is a chronic disease of the colon and rectum, together known as the large intestine. When inflammation and ulceration of the large intestine mucosa, or innermost lining, occurs, tiny open sores may form on the surface of the lining.Because inflammation damages the lining of the intestinal wall, it may bring about the onset of a flare, including diarrehea, bloody stoo, and abdominal pain or cramping. , UC affects only the innermost lining, whereas Crohn’s disease can affect the entire thickness of the intestinal wall.
Ulcerative colitis differs from another inflammatory bowel condition, Crohn’s disease. While Crohn’s may affect any part of the gastrointestinal (GI) tract, UC only involves the colon and rectum.
Who is BensFriends.org?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501©(3) non-profit, Ben’s Friends is a grassroots organization run by patients for patients. It is not a top-down, “expert advice” experience but a community offering peer to peer support. The value of this approach is evidenced by our hundred volunteer moderators, who are either patients themselves or relatives of patients, who believe in the mission and are willing to invest their time and share the knowledge and insights they have gained with members arriving daily in need of help. Ben’s Friends considers the patient perspective in everything we do. In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org1 to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
Focused on Patient Support
There are some amazing non-profit organizations all around the world doing fantastic work to raise awareness, raise money, and provide medical information to patients, friends, and family. We decided to complement their work, rather then duplicate. Therefore, we chose to concentrate all of our efforts on learning how to create and run compassionate, responsive patient communities.
Our communities have proved a valuable guide for members seeking to understand their diagnosis, symptoms, and their treatment options. Ben’s Friends provides a friendly environment that allows for bonding. Many a lifelong friendship has been forged on our communities. But most of all, Ben’s Friends is successful because it changes our members’ relationships with their disease. “I have the disease; it doesn’t have me” is a mantra often repeated by members, as they gently guide each other toward effective coping mechanisms and enable our patients to live the fullest lives possible.
Why Rare Diseases?
Global Genes reports that 350 million people worldwide suffer from a rare disease, with an estimated 30 million in the U.S. and an additional 30 million in Europe. So, while each separate disease is rare, being a rare disease patient is not. In fact, 10% of the population in the U.S. is living with a rare disease. There are over 7,000 types of rare diseases, from the extremely rare (only a few documented cases worldwide) to the “common” rare diseases (about 350 conditions, covering 85% of rare disease patients). When factoring in patients with chronic conditions, which may need the same type of emotional support and community fellowship as rare disease patients, the demand for online patient support communities is limitless and bounded only by our own resource constraints and capacity.
Why A Butterfly?
The butterfly is a fitting symbol for our support communities, as it denotes rebirth, transformation and gentleness. Our members often write of having experienced a personal transformation that is truly life-altering, which can reveal new insights about the world and about themselves. Our communities offer a way of helping each other move forward with positivity during the difficult transformation that illness can bring.
You can learn more about BensFriends.org at http://www.bensfriends.org3 or watch one of our videos at http://www.youtube.com/BensFriendsVideos.