Jason Leitman is the winner of our 2011 Health Activist Hero Award for his work with the Crohn’s Disease Support Network (CDSN). Dedicated to his community, Jason is all over the web – constantly working to improve connections among the patients and loved ones who deal with Crohn’s Disease. The Health Activist Hero Award is meant to celebrate someone who has truly changed people’s lives through their advocacy, support, and commitment. We couldn’t think of a better person to win this award than Jason. The praise we heard from his nominators and everyone who celebrated him after his win was just another testament to his wonderful work. Congrats, Jason! You really deserve it. Now, let’s learn a bit more about him in his own words…
How/why did you become a Health Activist? Tell us your Health Activist story!
I became a Health Activist in September of 2009 when I created the Crohn’s Disease Support Network (CDSN). CDSN is a free non-profit support network for people with Crohn’s and Inflammatory Bowel Disease (IBD), along with their family and friends. I wanted to create as much awareness possible for Crohn’s and other IBD’s. 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. I have personally been living with Crohn’s Disease since I was a child, and support is something I searched for with little success. I also always witnessed many times the effect the disease had on my loved ones. Multiple hospital stays, surgeries, and seeking answers for years were incredibly hard for my parents. I have seen the look of helplessness too many times, and finally felt the need to do something not just for myself as a patient but for the IBD community as a whole. I initially started my focus on Crohn’s Disease. As CDSN progressed I expanded it to include multiple IBD’s such as Ulcerative Colitis, Celiac Disease, Diverticulitis etc. I never considered myself a Health Activist – yet over the course of the last 2.5 years the response has been a truly humbling and cathartic experience. People’s personal comments have been incredibly supportive and moving. I strongly feel that this support along with the support I witness within the CDSN community motivates me everyday 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 (such as WEGO).
What are your goals for Health Activism in 2012?
My goals for Health Activism in 2012 are to continue to offer support to IBD patients and caregivers while spreading awareness. I would love to hold a CDSN sponsored fundraiser with the proceeds going to IBD research. I would also love to have more patients share their stories – something that can be an incredibly empowering experience. This can greatly help patients not feel ashamed or embarrassed by their disease. Finally, I would love to set up a program with pharmaceutical companies to help patients receive medications if they cannot afford them. Unfortunately a large majority of medications to treat IBD’s are very expensive, and it is imperative that patients receive these treatments.
What awareness event or effort are you most excited about in your condition?
One awareness event/effort I am most excited about is working to help IBD patients receive better dental care. Due to numerous reasons (malnutrition, medications, symptoms) patients teeth are greatly damaged. Unfortunately a great deal of patients cannot work and therefore have no insurance, and are either on disability with Medicare (and some also Medicaid). Most Dentists choose to not accept Medicaid, and Medicare has no dental program. Because of this reason, along with the exorbitant cost of dental care, patients greatly suffer. I took survey on CDSN with comments of how many members teeth have been damaged, along with the lack of dental coverage available to them. The response was both shocking and sad. I plan to meet with my local Government representatives in hopes of setting up a program working with Dentists to offer an incentive to help these patients. Because medications also play a great role in damage I intend to contact pharmaceutical companies in hopes of also setting up programs for patients.
If you could tell other Health Activists a few things about your condition and your community, what would you want them to know?
A few things about Crohn’s Disease I feel is important to know is it is an Auto Immune disease that is much more then causing patients to have to use the bathroom often. Crohn’s affects the entire digestive tract from the mouth all the way through. It causes major inflammation that eventually leads to scar tissue – which has to be surgically removed. Crohn’s can also affect the mouth (causing sores), eyes (causing inflammation), joints (causing inflammation, arthritis, and pain), the skin (causing painful sores and rashes), and in rare cases the lungs (causing inflammation and nodules). Symptoms include fatigue, malnutrition, nausea/vomiting, weight loss, frequent bathroom trips, and most frequent abdominal pain ranging from minor to acute. Currently there is no cure. Often the treatments cause side effects that are worse than the disease. It is imperative that awareness is raised and research is increased so a cure can be found!
The Crohn’s Disease Support Network offers patients a social network experience where they can share their stories, research and post education, and read about other patients experiences. Everything about CDSN is 100% free. Everyone involved in running the network 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 where patients chat live with each other. We also offer support to patient’s family and friends because watching someone you love live with a disease like Crohn’s can be incredibly difficult. Family and friends need support just as much as patients. By reading what other patients experience they can have a better understanding of what their loved one is going through. CDSN has members from all around the world. Currently we have members in over 20 countries – and growing.
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