The use of hashtags is not approved by Michael. For someone who loves the passive voice, apparently hashtags are just a bridge too far. This assault on the Queen's English shall not stand according to my dear husband. Apparently, he's convinced that hashtags are the equivalent of "linguistic genocide".
Now that I've got you interested, let me explain how we got to this point. See, today I got one of the Crohn's and Colitis Foundation of America's (CCFA's) email blasts about funding for IBD research. Readers were encouraged to contact their Senators to see that the amount allocated to the Centers for Disease Control for IBD research actually gets funded. Now, I know that everyone thinks his or her disease is the most grossly underfunded disease out there and I know that the economy is sucky. But the amount allocated to the CDC for IBD research is less than $700,000.00 That equates to less than $0.50 for each American living with IBD. Think about that--you can't even buy a soda from a vending machine for that amount. And that's just what is allocated, and we all know that Congress doesn't always (or ever) fund that amount for research. So when I forwarded that email to Michael today, I added #whywerun, which led to the first paragraph.
Now, I don't have a problem with hashtags at all, but the more I thought about Michael's comments about language in general, the more I realized that maybe language is part of the problem with IBD's lack of research dollars. Many of you readers are nurses and already know what's about to come next, but to the lay person a lot of medical terms sound alike. Case in point--inflammatory bowel disease (IBD) versus irritable bowel syndrome (IBS). They sound alike and both involve bathroom issues. Distinction without a difference, right? IBS isn't any big deal, just an inconvenience, so why all the fuss about funding? Here's why, according to CCFA's website: IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn't result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives. Contrast that with IBD, which is a broad term including Crohn's Disease and ulcerative colitis--not only are patients at higher risk for colon cancer, IBD patients run the risk of bowel perforation, toxic megacolon, fistulas, strictures, abscesses, anemia, malnutrition...the list goes on, but you get the idea. IBD patients may also experience complications outside the gastrointestinal tract which can include certain types of arthritis, skin conditions, inflammation of the eye, liver and kidney disorders, and bone loss. And this is to say nothing of the long-term effects of steroid treatment!
So, now do you see the difference?
#languagematters
you and i need to just head to Capitol Hill and demand more money for both IBD and pediatric cancer.
ReplyDeletelanguage does matter:)
Well Megs, since you are a large part of my inspiration in doing this, I think a Capitol Hill trip would be perfect :) In my ideal world, patients wouldn't have to fight for research funding. I mean, 50 cents a person for IBD research? And I know that pediatric cancer funding isn't any better either, grrrrr. My pet peeve is that we all have to try to convince the world "my disease is worse than all those other diseases" which is counterproductive and stupid. Sigh, I guess it is just the way it is--which is why I've entered the fight too--but I still don't like that part of it. ALL disease research needs to be better funded, not just those diseases with the squeakiest wheels! But, as long as the squeaky wheels get the money, I'll be adding my voice to get those dollars. Hrmph.
ReplyDeleteAnd I just reread this and realized how harsh this post appears with respect to IBS. I know that IBS is painful and embarassing and not at all fun. I didn't mean to minimize IBS but I just wanted to point out how different IBD is from IBS and to try to explain just how serious IBD can be.