The IBD Support Foundation fills the gap in support services for patients and families confronting inflammatory bowel disease.
By Diana Price
For 14 years Marci Reiss lived the life of a patient with an incurable disease. Diagnosed with Crohn’s disease in 1997 at age 27, Marci was hospitalized more than 160 times, managed medication side effects and numerous procedures, and felt the full physical, emotional, and social burden of living with a disabling disease that affected every aspect of her life. In 2011 Marci was delivered equally transformative news: she had been misdiagnosed; she did not have Crohn’s disease. She stopped all treatment and became well.
The gift of her health, after so many years of suffering, reaffirmed her mission to continue with work she had begun in 2003, while managing illness herself, to serve patients and families facing a diagnosis of inflammatory bowel disease (IBD) by providing psychosocial support.
Overwhelmed by the lack of information and guidance she had been provided at diagnosis, Marci founded IBD Support Foundation (IBDSF), a not-for-profit organization dedicated to “improving the quality of life for individuals with Crohn’s disease or ulcerative colitis through psychosocial support, education, and research.”
Marci’s desire to help other patients and families stemmed from her own traumatic introduction to managing disease: “I had entered the ER [emergency room] as a healthy person and left with [a diagnosis of] an incurable disease, with no idea what that meant for my life and my future,” she says. “I was filled with questions and horrified that this is what happened to people—that they were given a disease diagnosis and a follow-up appointment but no guidance.”
In the aftermath of that experience, Marci pursued a master’s degree in medical social work and has consistently worked to build IBDSF to provide psychosocial support to IBD patients and families. Her goal, then and now, she says, was to “enable people to go back to a prediagnosis state of functioning,” to help them understand that they can still accomplish their goals and achieve their dreams despite the diagnosis.
Psychosocial support is uniquely essential for patients and families confronting a life with IBD, Marci says. Across age and stage of life, patients must manage symptoms that are as emotionally painful and uncomfortable as they are physically disabling: the inflammation of the gastrointestinal tract that characterizes IBD can lead to diarrhea, rectal bleeding, and lack of bowel control as well as fever, fatigue, and unintended weight loss, among other symptoms.
“What’s uniquely challenging about IBD is that the symptoms are not easy to talk about,” Marci says. “It’s not easy to explain to others, and the symptoms can be very embarrassing.” Patients feel isolated and experience a lack of control that can be crushing, and the disease can exact a high toll across many aspects of life, damaging relationships, thwarting career objectives, and undermining self-esteem.
Further exacerbating the situation, Marci says, is the fact that upon diagnosis patients and families meet this new reality without the skills to cope, process, and overcome the challenges they face. “When you’re diagnosed with a chronic disease, it’s a life-changing experience, yet there’s no preparation for this experience, no guidance.”
It is the goal of IBDSF, Marci says, to provide programs and services to fill this gap in education and therapeutic support so that patients can overcome the many hurdles they will face throughout their lives with IBD. To that end IBDSF has created a truly comprehensive range of offerings that include pediatric and parent support groups, young adult groups, individual and family counseling, school advocacy, and hospital visitation programs— all free of charge. In addition to the in-person support programs, IBDSF has recently partnered with OMNI Health Media to moderate the Crohn’s disease and ulcerative colitis communities on TheGIConnection.com, an online support community providing information, inspiration, and support for individuals with conditions affecting the GI tract.
Headquartered in Los Angeles, IBDSF is currently serving patients and families in Southern California, across the United States, in Canada, and in Israel. In addition, efforts are under way to implement IBDSF’s standardized psychosocial assessment and intervention protocols in healthcare settings that will help physicians and allied healthcare professionals provide their patients with support from the point of diagnosis.
As IBDSF moves into its second decade of providing therapeutic support to patients and families confronting IBD, Marci says she continues to be inspired by her original mission: to alleviate the pain and suffering of patients.
For more information about IBDSF, visit ibdsf.org.