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Mariah's avatar

It's Crohn's and colitis awareness week. Are you aware of these diseases, and what can be accomplished by having a designated week for awareness?

Asked by Mariah (18402 points ) December 1st, 2011

A resolution has just been passed designating December 1–7 Crohn’s and colitis awareness week. Lots of people suffer from these chronic conditions, including me, yet they don’t seem to have much recognition. Does having an awareness week really increase public awareness? And does it have any tangible effects on research and development?

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20 Answers

Adirondackwannabe's avatar

Can it hurt? I think not. Knowing about these has got to be benefical for the people that have to deal with them, I would think.

picante's avatar

I’m aware of the diseases, but I was not aware of the week of awareness. It was actually Kurt Cobain’s suicide that put Crohn’s disease on my radar, I’m sorry to say.

Hmmmm, I guess I too don’t see the harm, but I’m struggling to find the solid outcome (sorry, no pun intended, really). I’m all for raising awareness around disabilities, diseases, etc., but I’m just not seeing how designating a week raises public awareness.

I would think that the organizations that provide funding for education and research could find a more creative approach. But I could be wrong.

wonderingwhy's avatar

I’m aware of the diseases having a somewhat distant relation who was diagnosed with Chron’s (after a long debacle of misdiagnoses, denial, and inadequate treatment). I had no idea there was a, or a plan for a, related “week”.

For myself all these “awareness” weeks and months pretty much just blend together and cancel each other out in my head, there’s too many for me to pay attention to. But in general, I would think such things are beneficial to people directly affected and can bring issues closer to public consciousness. While I’m not sure it makes a difference in terms of R&D (though it obviously can through focusing fundraising and legislative efforts), getting people thinking doesn’t strike me as a bad thing – particularly when it’s about what can be done to alleviate the associated suffering.

I say “can” for a lot of that as I feel there’s something of a direct correlation to the number of people actively involved in promoting sustained efforts, simply saying “this week is X awareness week” doesn’t seem like it would have much of an effect by itself.

Adirondackwannabe's avatar

Is the collective aware of how debilitating these diseases can be?

zensky's avatar

I’m aware of the diseases, but I was not aware of the week of awareness

Michael_Huntington's avatar

Psh, I knew these diseases before the awareness week /hipster
But seriously, although I don’t suffer from these diseases, I’ve read some accounts from Crohn’s sufferers. They were just brutal and painful to read. I’m all for awareness, I just hope this awareness doesn’t fall into slacktivism. If you want to do something about a disease, changing your profile pic on facebook isn’t going to do squat.

wonderingwhy's avatar

@Adirondackwannabe Is the collective aware of how debilitating these diseases can be? From my relatives case, yes. She had a pretty miserable time of it until she was finally properly diagnosed and treated. Everything from the physical symptoms and issues to the psychological weight of not knowing and the what if’s to the financial burden she and her husband faced. It was significant enough for them to delay a lot of things, including her PhD and their having kids, until they understood what was going on and how to deal with it.

augustlan's avatar

I had a good friend diagnosed with Crohn’s after years of being told it was all in her head. I learned a lot about it from her, and later, her sister, who also had/has it. Both of them underwent surgeries, to varying degrees of success, and both still deal with the aftermath of that, too. I think an awareness campaign can’t hurt, but I don’t really know how much it helps.

Ayesha's avatar

Definitely helps! I think it’s great. It’s selfless acts like these that put a smile on my face.

Mariah's avatar

No, it certainly can’t hurt. I’m glad about this milestone. I just hope it brings about real change. Like @Michael_Huntington, I’m concerned about slacktivism. Certainly some people will post a Facebook status and then pat themselves on the back for making a difference. But overall, I think it’s a very good thing. There’s not enough awareness, probably at least in part because many of the patients are embarrassed to talk about it due to the nature of the disease. Other autoimmune diseases, particularly Lupus, are much more well-known.

@Adirondackwannabe “Is the collective aware of how debilitating these diseases can be?” With all my bitching, I’d be willing to bet that many jellies are! xD

Adirondackwannabe's avatar

@Mariah I once worked with a client that had a brother come down with Crohns one Summer. He went from a 205 pound all state wrestler to a 140 pound shell, and had to have a colonostomy to save his life. It was pretty mean.

Mariah's avatar

@Adirondackwannabe It is brutal. I’m “lucky” to have ulcerative colitis instead of Crohn’s (the difference is that colitis affects only the colon while Crohn’s affects the entire digestive tract); in my case, total colectomy is a cure. In the case of the guy you’re talking about, his symptoms were probably reduced due to the surgery but it can still come back in the remaining tissues. I know of people who just had to keep getting bits of intestine removed until they didn’t have enough left to digest food and are stuck on IV nutrition for the rest of their lives. What a nightmare.

JilltheTooth's avatar

One of the good things about Awareness campaigns is that people are then willing to be checked out, and that may lead to a diagnosis that can be dealt with. Public awareness is always a good thing. Various “embarrassing” conditions can become de-stigmatized by public awareness, and such openness leads to more money for research, better and more effective treatments, etc.
Having watched your battle, @Mariah , we are fortunate to be aware. Thanks for having the grace and courage to share with us.

Michael_Huntington's avatar

@Mariah Yeah I agree. Slacktivism is annoying, but Crohn’s and colitis receive little to no coverage. I guess it could be harmless depending on the situation.
Sorry for coming off as a cynical bastard in the first post

Blackberry's avatar

I didn’t even know what they were until I just googled them.

JilltheTooth's avatar

@Michael_Huntington : I also get really annoyed at the “if you care about this disease repost this” stuff FaceBook slacktivism, but having an officially declared awareness time span is different. A lot of research has been funded because people are aware due to these awareness Campaigns and folks realize that someone they know is afflicted.

Mariah's avatar

@JilltheTooth Oh, thank you dear. I’d say it was less about grace or courage than it was about needing some anonymous strangers to rant to, though. xD

Michael_Huntington's avatar

@JilltheTooth Yes I know there’s a difference between legitimate/official awareness (advertisements, campaigns, donations, etc) vs slacktivism (“like this if you want to help!!!”). My main rant was against the latter. I have no problems whatsoever against the former.

mazingerz88's avatar

Having been through ( hopefully ) a difficult medical situation recently, I now pay more attention to things like this but also feels guilty somewhat that most of the time I prefer not too—because I’m easily depressed thinking about it.

fizzbanger's avatar

Unfortunately, I learned about Crohn’s from a friend that pretended to have digestive issues to disguise her eating disorder.

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