Jamie Mendelsohn and Jill Theisen are 39-year-old twins who have been living with inflammatory bowel disease (IBD), a group of diseases that includes Crohn’s disease and ulcerative colitis. Both twins are involved in the Take Steps initiative from the Crohn’s & Colitis Foundation of America (CCFA) and have set a goal of $100,000 for this year’s event.
Jamie and Jill were diagnosed with ulcerative colitis in their 20s — Jamie in 1999 and Jill in 2002. Both experienced different IBD journeys.
Jamie spent the first few years with ulcerative colitis on a variety of medications and being in and out of the hospital. She had a colectomy, an ileostomy, and more than a dozen blood transfusions in 2004. Later that year, she had a second surgery to reconnect her small intestine and create a j-pouch. She thrived following the surgery until 2007 when she began experiencing pyoderma gangrenosum (a serious skin condition with painful sores), fistulas, and other extraintestinal manifestations. She has lived with an ileostomy since 2011 after being re-diagnosed with Crohn’s disease.
Jill was diagnosed three years after Jamie. She lived with minimal symptoms and had a healthy pregnancy. She became sick following her daughter’s birth and in 2007 had surgery to remove her colon and underwent reconnection surgery three months later. Since her surgery, she has been able to maintain a good life with her family and a career.
CCFA, a nonprofit, volunteer-driven organization dedicated to finding cures for Crohn’s disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases, has invested more than $267 million in IBD research, with studies showing promising new results for IBD sufferers.
Scientists have identified more than 100 genes that increase the risk of developing Crohn’s disease and ulcerative colitis, confirming that these often-debilitating IBDs have a strong genetic component. The organization’s IBD Genetics Initiative — Unraveling the Genetic Components to the Development of Crohn’s and Colitis, continues to conduct studies that have demonstrated how specific organisms in the gut can cause IBD in the presence of specific genes, and that specific genes only cause disease in the presence of specific organisms.
Six years ago, Jamie and Jill got involved with Take Steps, a family-friendly event where patients, loved ones, friends and supporters empower and inspire each other to continue the fight against Crohn’s disease and ulcerative colitis.
Patients and their families are provided the perfect opportunity to connect with the greater IBD community, helping them understand they are never alone in this fight. In 2015, more than 40,000 patients, family members, and loved ones gathered in 129 events across the U.S. and raised $10 million to support CCFA’s mission.
Both Jamie and Jill have a passion to find a cure, particularly for the 80,000 children that suffer with IBD in the U.S.
“We got involved with Take Steps because we believe in the mission of CCFA, because we think there will be cures for IBD,” Jamie Mendelsohn said in a news release. “We’re supporters of creating awareness of the diseases, for raising capital to support the research needed to cure these diseases, and to find out what’s the catalyst for patients diagnosed.”
Through this year’s Take Steps, Jamie and Jill have a target to raise $100,000 for CCFA in a Crohn’s & Colitis event in Orlando.
“This isn’t a disease that just impacts the patient. It really impacts the whole family, the whole circle that surrounds the individual that has these diseases,” Jill said. “People walk with Take Steps because it’s enjoyable. It’s a celebration. But it’s more about seeing other people who are living with IBD and supporting each other in our fight against these diseases.”
This fall, Take Steps has more than 50 events in communities across the U.S. For more information on how to connect with patients like Jamie and Jill, while fundraising to support research critical to the mission and patient education programs, please visit www.cctakesteps.org.