Saturday, May 19, 2012
World IBD Day!
Today is world IBD day. IBD -- inflammatory bowel diseases like Crohn's and ulcerative colitis -- affects about 1.4 million Americans. When I was first diagnosed, they had only first started using colonoscopy and upper endoscopy as diagnostic tools. When I had an upper GI and barium enema and they found nothing, they said it was all in my head and sent me to a shrink until I was bleeding internally and they couldn't ignore the fact that I was sick. Twelve years of prednisone followed, during which I was a completely different -- in a very bad way -- person. Today, with a new diagnosis and decent insurance, you can take a 5-ASA, Remicade and 6MP, and achieve and maintain remissions for long periods of time. We know so much more today. Now, we have to find a way to get this newer standard of individualized care out there to everyone, insurance or not, money or not. No more people in small towns who are on narcotics alone and, thus, become disabled. No more people who can't get a good diagnosis because they can't afford a colonoscopy. The advances we've made have been patient driven. CCFA was started by patients and their families. Now, there are so many other patient-driven organizations all working together to fund and find the cure -- and to make sure we have decent quality of life until there's a cure. Advocacy for Patients is part of that constellation of patient-driven organizations. I'm so proud to be part of this movement -- and so privileged to do this work. Think you're too sick to make a difference? If all 1.4 million of us told our story to one person who never met someone with IBD today, we will put a face on the disease for 1.4 new people -- and show ourselves and others that these diseases are not something we need to hide. Tell your story. Feel the power. Today I honor Mike McCready and Ashley O'Connor for all they have done to make it okay to talk about IBD, who support the camps for kids, who support Advocacy for Patients. They -- like Michael Modell and Suzanne Rosenthal before them -- are showing us how to live with IBD with grace, dignity, and hope. Jennifer