UC to J-Pouch Story

Poll on disease awareness

Posted by Megan on December 4, 2008

I was recently flipping through the trend magazine, People.  The cover story was about Michael J. Fox and his battle with Parkinson Disease.  The article discusses Parkinson, Michael’s symptoms, states that nearly 1 million people in the US live with the disease, and it talks all about the advocacy being done for the disease, especially by high profile individuals.

My question then is this:  According to Mayo Clinic nearly 1 million Americans live with IBD (Crohns or UC).  But I’ve never seen a celebrity or high profile individual on the cover of magazine “I’m living with UC – and I sometimes have accidents in my pants” – Why not?  I figure if the shame of IBD related symptoms was not so embarrassing in society, maybe it would be easier to draw awareness to the diseases.

Therefore, I want your opinion on whether or not you think IBD would receive more public advocacy if the symptoms of the disease didn’t have to deal with things like poop and such?

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7 Responses to “Poll on disease awareness”

  1. ucvlog said

    I agree that colitis and Crohn’s are definitely uncool diseases. Which is really unfortunate, since, as the potty-training book says, “Everybody poops.” It’s one of the most universal of all human situations and yet nobody acknowledges it.

  2. Colette said

    This is so true. There are still so many people I talk to that have not idea what this disease even is. President George W. Bush’s Brother suffers from UC, but you don’t see him sharing this story on a magazine. Nor did we know that while his father was in office he had a major flare and was diagnosed…..

  3. Eric said

    I agree guys. Something I have always had a problem with was how dehumanizing this disease really is, I mean, learning to control your bladder and BMs is one of the very first things humans learn. It’s inherently human to go to the bathroom in a designated place, under your own terms. Once that barrier is broken down, by having a form of IBD or other disease, it’s almost like you’re not part of the club anymore. Having more high-profile people telling their story would definitely help “re-humanize” Crohn’s / Colitis.

  4. mark said

    I always felt sorta annoyed that Martin Bush (I think his name) never talked about his UC or his subsequent colectomy – although I understand his desire for privacy, I also see that his family has a social responsibility to promote awareness toward IBD, I mean they are the Bush family. If Bob Dole can promote ED (erectile dysfunction) then the Bush family could promote IBD awareness.

    As we grow the blog, we should try to get some high profile contributors to speak more freely about their experiences.

  5. Hannah said

    I talk about poop in my blog! I wish some celebrities would come forward too. It would sure help the rest of the world (at least) get to hear about this disease. I’m 19 now and I’m surprised how many of my friends still don’t even know what a colon is!!!

  6. Eric said

    Ha ha, that’s nothing Hannah, I’m 30 and didn’t know that the Large Intestine was the same thing as the Colon. Why didn’t I know that?!?

  7. E. said

    Actually, Bush’s little brother is Marvin Bush and had UC in 1985 (well, according to the following website), he now lives with a permanent ileostomy.

    http://ibdcrohns.about.com/od/guesswhohasibd/p/marvinbush.htm

    Apparently though he is and advocate for IBD awareness through CCFA. This is good article about a “Treatment not talked about – Ostomy Surgery” “http://findarticles.com/p/articles/mi_m1154/is_n11_v81/ai_14803041 In fact the article states so well “While ostomies “are still not cocktail party conversation,” as Marvin Bush says, they no longer bear the social stigma they once did. More and more people are realizing that they bring invaluable relief and extended life to many thousands every year.”

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