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


  1. Are you or your loved ones being Bullied? I have multiple autoimmune disorders. I was terminated approximately three months after I turned in my FMLA paperwork. I was merely asking for one day off a week, to work on my health issues. I had accrued enough paid time off and wanted to... use it for this reason.(I had worked there for fifteen years). I became a "target" when as I became increasingly more ill. I was subsequently, bullied, "mobbed", verbally abused and ostracized. The sicker I became the more intense the bullying became. I was terminated before I was done with my testing, which revealed more health issues. I have no doubt the additional stress caused by this inhumane treatment added to my declining health.To my dismay, EEOC was of no help whatsoever. Now that I KNOW…. I feel compelled to do something to help get laws passed. Hopefully,in the near future, other people won’t have to worry about how to survive this type of horrific, demented, torture at work…*For "Facts, Stats" and personal experience.. Please read and sign this petition. We have to start somewhere, so we can put an end to this mean spirited, life threatening behavior. If we do nothing, it won't change... Our signatures will go to "The Healthy Workplace Bill". I'm not alone in this. *Some two million people have been bullied at work in the past six months, latest figures have suggested - "The victims of bullying need to be listened to and supported, not dismissed as workplace wimps," concluded. Author: Nic Patontaken from Management Issues Too many of us know how awful it is, to be picked on and bullied. Its SHAMEFUL (to say the least). I thank God I didn't give up when it happened to me.. LET'S stop these Adult Bullies who will single out and "target" whom ever they please, as we know many times they "target" people who are gay, they pick on the healthy, straight, and disabled. Those of us known to have invisible disabilities or the color of our skin, etc. Bullies have no boundaries ... Please sign this petition, so we can begin to put an end to this horrific treatment of YOU or your loved ones ! Bullies have... "Taken it from the playground to the work place" and are "BULLYING" innocent people to 'DEATH" !

  2. Can you HELP me with this petition? If not can you refer me to someone who can? Thank you, Beth