Twins Diagnosed with Ulcerative Colitis Support Research Efforts by the Crohn's & Colitis Foundation of America
Sisters Diagnosed Three Years Apart Join Take Steps Each Year to Raise Funds and Support Community
New York, NY - It is said that the bond between twins is unlike any other sibling bond. Twins go through life sharing everything – birthdays, clothing, friends, school, and much more. Jamie Mendelsohn and Jill Theisen are no different. The 39-year-old twins shared everything as children and now, as adults, they share another major aspect of their lives – inflammatory bowel diseases (IBD).
Jamie and Jill’s diagnosis is not as uncommon as one might think. IBD occurs in both twins 50 percent of the time. The Crohn’s & Colitis Foundation of America (CCFA) has invested more than $267 million dollars in research of IBD and studies are showing promising new results for IBD patients and their families. The Genetics Initiative, for example, continues the work of several recent 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. The Genetics Initiative is a collaborative effort to better understand the genes and their functions, and the chain of biological events that result in IBD.
Jamie and Jill were first involved with Take Steps for Crohn’s & Colitis six years ago. Both have a driving passion to find cures, especially for the 80,000 children currently living with IBD in the United States.
Take Steps is CCFA’s largest fundraising charity event dedicated to raising mission-critical funds to continue research efforts currently underway to find cures for these diseases. In 2015, more than 40,000 patients, family members, and loved ones gathered in 129 events across the country to raise more than $10 million to support CCFA’s mission.
“We got involved with Take Steps because we believe in the mission of CCFA, because we think there will be cures for IBD,” says Jamie. “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.”
Jamie and Jill have set an aggressive goal to raise $100,000 for CCFA through Take Steps this year at the Orlando Take Steps for Crohn’s & Colitis event.
“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,” says Jill. “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.”
Take Steps has more than 50 events this fall in communities across the United States. Connect with patients like Jamie and Jill while fundraising to support mission-critical research and patient education programs. Learn more at www.cctakesteps.org.
Jamie and Jill’s Story
Jamie and Jill were both diagnosed with ulcerative colitis in their 20s – Jamie in 1999 and Jill in 2002. Jamie spent the first few years with ulcerative colitis on a variety of medications and being in and out of the hospital. In 2004, Jamie had a colectomy – surgical removal of the colon – an ileostomy, and over a dozen blood transfusions. 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 symptoms and extraintestinal manifestations; this included Pyoderma Gangrenosum and fistulas. Jamie has since been re-diagnosed with Crohn’s disease and has lived with an ileostomy since 2011.
Jill was diagnosed three years after watching Jamie live with ulcerative colitis. Although she was devastated by the diagnosis, watching her sister persevere helped her maintain a positive attitude. She lived with minimal symptoms and was able to get pregnant and have a healthy pregnancy without any major flaring. Following the birth of her daughter, she became extremely sick and ended up taking time off from work to focus on her health. In 2007, Jill had surgery to remove her colon and had her reconnection surgery three months later. Since her surgery, she has had some complications but has been able to maintain a great life with her thriving career, daughter, and husband.
Crohn's & Colitis Foundation
The Crohn's & Colitis Foundation's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. The Foundation ranks third among leading health non-profits in the percentage of expense devoted to research toward a cure, with more than 80 cents of every dollar the Foundation spends going to mission-critical programs. The Foundation 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).