EGO Health is a nonprofit organization that empowers and celebrates the top 10 percent of online health social media contributors to connect with each other and with healthcare companies. One way of celebrating these Health Activists was by holding their first WEGO Health Activist Awards. Jason Leitman had the honor of being named the Health Activist Hero for 2011. He was nominated and voted upon by the peers in his community, making this honor even more special. Jason was up against 139 nominees. The awards were announced on Jan. 31.
Leitman was born and raised in Cincinnati. He is 31 years old. At the age of 19, he was diagnosed with Crohn’s. As with most Crohn’s patients, he went undiagnosed for many years. He was sick from the age of 5. At 10 he was admitted to the hospital for an emergency appendectomy, but his stomach issues continued. When he was 19, he woke up exhausted and with stomach pains. Jason’s doctor sent him for a barium follow-through. He was diagnosed with Crohn’s. That year Jason had his first bowel resection in May 2000. From the time of his diagnosis in 1999 to 2005, Jason had between 17 and 20 abscesses drained. In that time he had three major surgeries. In August 2010, Jason began to retain fluid that would not go away. In October 2010, Ascities was discovered. He was immediately admitted to the hospital for 32 days and was told he had Hepatitis B. The doctors believed he contracted Hepatitis B from one of his hospital admissions through cross contamination.
Jason now has Chronic Hepatitis B, with Stage 4 liver failure. The combination of a medication for Crohn’s and the Hepatitis is destroying his liver which is causing several other complications. He has Hepatopulmonary syndrome—a rare condition which causes broadening of the veins in the lungs, and Portal Hypertension—both caused by cirrhosis of the liver. The only treatment for Hepatopulmonary Syndrome is constant use of oxygen. The only cure for both complications is a liver transplant, which Jason is going to have at the University of Cincinnati. He needs a full liver and the wait can be anywhere from months to a year.
Jason became a Health Activist in September 2009, when he along with family and friends created the Crohn’s Disease Support Network (CDSN) a free, nonprofit support network for people with Crohn’s and Inflammatory Bowel Disease (IBD).
“When creating CDSN I never imagined it would evolve the way it has, having such a positive impact on people’s lives including my own,” Jason said. Having lived with Crohn’s Disease since he was a child, he found that support was something he searched for with little success. He also witnessed the effect the disease had on his loved ones. The entire ordeal was rough on his parents. Seeing the look of helplessness so many times, Jason felt the need to do something for himself and others in the IBD community.
The initial focus of CDSN was on Crohn’s Disease. As CDSN progressed Jason expanded it to include multiple IBD’s such as Ulcerative Colitis, Celiac Disease, Diverticulitis etc. People’s personal comments have been incredibly supportive and moving which led to his WEGO award. “I strongly feel that this support along with the support I witness within the CDSN community motivates me every day with the goal of helping at least one person. It is an honor to be considered a Health Activist; something I feel I have grown to become thanks to the members of CDSN and the health community,” he said.
Winning this award will help Jason with his future goals: offering support to IBD patients and caregivers while spreading awareness, holding a CDSN sponsored fundraiser with the proceeds going to IBD research, establishing a program with pharmaceutical companies to aid patients in receiving medications when they cannot afford them, and finally, working with political leaders to get Medicare to cover dental care for Crohn’s and IBD patients.
The CDSN offers patients a social network experience where they can share their stories, research and post education, and read about other patients’ experiences. Everyone involved is a volunteer. CDSN offers patients their own personal customizable page where they have a profile, pictures, videos, a journal/blog, unique groups, a forum, and the network has a chat room. CDSN also offers support to patient’s family and friends because watching someone you love live with a disease like Crohn’s can be incredibly difficult. By reading what other patients experience hopefully they can have a better understanding of what their loved one is going through. Currently CDSN has members in over 20 countries and growing.