Awareness.

Age : 31 Posts : 716

Quote :

U.S. Senate passed Senate Resolution 199 (SR 199), “A resolution supporting the goals and ideals of Crohn's and Colitis Awareness Week, December 1-7.”

For those of you that don't know, S. Res. 199 expresses appreciation to the family members and caregivers who support people in the United States living with Crohn's disease and ulcerative colitis. It also commends health care professionals who care for Crohn's disease and ulcerative colitis patients and biomedical researchers who work to advance research aimed at developing new treatments.

You can get involved in raising awareness by the following:

Write to their House Representatives and encourage them to join the Crohn’s and Colitis Caucus, http://capwiz.com/ccfa/home/
“Like” the Crohn’s & Colitis Foundation of America on Facebook (www.facebook.com/ccfafb) and follow the Foundation on Twitter (www.twitter.com/ccfa)
Change your Facebook status to: I’m supporting Crohn’s and Colitis Awareness week and you should too! To learn more, http://online.ccfa.org/AwarenessWeek
Use the #CCFAawarenessweek on twitter
Change your profile picture to our logo, download here.
Download our Awareness Week Poster.
Reach out to anyone you know with IBD and let them know you care
Download the Crohn's and Colitis Awareness Week Press Release.
Visit www.ccfa.org to learn more about the disease

I have just recently learned of this, and was rather hesitant to post it here. However, my curiosity and optimism got the best of me. I was diagnosed with Crohn's disease when I was fourteen, at the very start of my freshman year. I'm not gonna lie, it was tough. And at that time, I was considered having it a very young age. Unfortunately, since then younger and younger people have been diagnosed. So here I am, wondering if anyone else here knows someone struggling with the above, or if they have it themselves.

I've been very hesitant about talking about it with the majority because I never know how people will react, and I always seem to fear people will look at me differently. But I know now it's kind of a part of who I am, and despite how miserable at times, there are a lot of people I would have never met or things I wouldn't know if not for being diagnosed. And honestly, I believe it has helped me grow a lot over the past few years. I'm not the social butterfly however, so I don't have a facebook or twitter or any of that, and this as close as it gets for me outside my small group of trusted friends that I wouldn't trade for the world.

But enough about me, I want to hear about what you guys have to say, if you're willing to share.

Age : 29 Posts : 3640

Thank you for posting this on here, Meg! Crohn's is one of the things that I raise awareness about when the time comes around; as well as cancer and MS. Although it isn't an issue for me, or my immediate group of friends, I've known some amazing people with Crohn's disease.

Age : 31 Posts : 716

Aw. Thank you so much, it means a lot. And I'm sure a lot of people are grateful for your support.

Posts : 372

They also passed S. 1867, which almost shatters all that we have left of our Bill of Rights.

Posts : 1044

Hage does not understand this topic.

Age : 49 Posts : 1036

Can you two act with a bit of maturity for once? I understand you both enjoy being pricks that people consider living jokes with no redeeming value but this thread is neither the time or the place for adolescent attention-seeking behaviors.

Back to Phantom's topic now.

Personally and professionally I'm glad that this condition is starting to get the attention it deserves. Since with attention comes interest & funding put towards finding better ways of early detection and treatment.

And I tip my hat to you Phantom. I've been lucky in that all I've had are the "normal" illnesses and semi-regular animal bites. I don't know if I could handle a chronic condition nearly as well as you seem to.

Posts : 1044

NuclearTreerat wrote:: Can you two act with a bit of maturity for once?

Your personal perception of maturity differs from my own so if you're asking someone to abide by your code of conduct, you'll always be unhappy with the result. So no, I won't act according to your perception of maturity. And for future reference don't lump me in with Rizzy, thats not a thing that makes me a happy camper. Let me make that very clear, very early, because its on that list of 'Things That Can Actually Piss Off Hage' and its better for everyone if we avoid that. Unless you're just aiming to be one of the privileged few who gets to see me legitimately angry, in that case you have a very bad goal to pursue.

NuclearTreerat wrote:: I understand you both enjoy being pricks that people consider living jokes with no redeeming value but this thread is neither the time or the place for adolescent attention-seeking behaviors.

You made a mistake in saying you 'understand' if you follow it up with that. You can perceive me however it is you like but you can't make any assumptions on anyone elses part without being in extreme error. Its presumptuous and pompous to assume that you know how I function. Its even worse when you're dead wrong so how about you sit down and think about things. I'm far from 'a living joke', I highly doubt you have a single ounce of evidence to back that one up considering you hardly even know me, and I have my fair share of 'redeeming value', things that people can pick up quite readily if they're not too busy trying to paint me blacker than the cast of Everybody Hates Chris. I'm also not exhibiting any 'attention-seeking behaviors', unless attention is equivalent to information cause' I am seeking that, and to call someone an adolescent would be inaccurate when someone's age is not in the grouping. And that term is very specifically age-only unless you're extending it beyond its actual use and meaning, so do pick your insults more wisely. Calling someone a prick because they just so happened to post a comment in a topic isn't good behavior or manners, especially considering the fact that nothing has been done that anyone could consider 'wrong'. Except for you apparently. Sounds like a personal problem but dragging it out into an unrelated topic is kind of rude, no?

Are you quite finished making a fool out of yourself by overreacting to a sentence-long comment about a topic or are you just going to drag this on a little longer until you can find some way to verify a point that relies on error-ridden assumptions to feel like you accomplished something? Stating that someone doesn't understand something doesn't imply ANY of the things you've stated and it sure as hell doesnt verify them. Your choice of assumption doesn't define a single thing about me, nor does it make you any more accurate in your perceptions of me, it only adds evidence for YOU to feel how YOU feel. But do enlighten the rest of us here, what exactly did I say that you could perceive in such a fashion as to elicit this type of response? Was it something about how I chose to state I didn't understand what was going on in this topic rather than saying something without understanding? Or maybe it was the fact that I posted at all in your apparent 'Hage-proof Sanctuary'? I don't get it, I really don't want to, just quit getting all uppity about nonsense and take a pill or something, get up and dance the Fandango, drink coffee, whatever it is that settles you down. AT LEAST wait for me to say something worth disagreement before you have a temper tantrum, otherwise you just look impulsive and short-tempered.

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Anyways, that all aside, I still don't understand this topic. I don't even understand the disease thats being brought up, there doesn't seem to be any decent sources on the internet that state what it does in terms that I don't need a degree to understand. Theres very little information on what exactly it does to the afflicted or how that influences their life but considering I've never heard of it, I'm interested. I can't claim sympathy or any kind of support to any cause because frankly I'm not an emotional mess who needs to validate himself by standing behind causes for things I don't actually work for, if I was doing something about the issue sure but beyond that, nope. I'm also not a fan of acting on pity ('if you dont donate people will die by the thousands every second, GIVE ME MONEY!') or trying to elevate an issue beyond its actual importance ('sometimes if you have a sore throat, you can DIE. Support sore throat research NAO!') but without knowing the disease in question or how it works I can't decide what I think about it. Everybody has their afflictions and they deal with them, thats not my banner to wave around or my concern, but my banner is information gathering. So if anybody wants to fill me in here about what this is that would probably help, not to mention other people skimming the topic who aren't actually saying anything.

So, what exactly does this cause, what does it do, how does it influence someone's life, and why? I've got at least a hundred rubber bands for a batch full of terrible infectious diseases but do forgive me if I don't know about this one. I'm an Entomology student, not a nurse (the costume rides way too far up my ass for my comfort anyways...)

Age : 31 Posts : 716

This topic isn't for insulting another or petty arguments, so please take that elsewhere.

As for the most descriptive and truthful information on the internet regarding Crohn's and ulcerative colitis, I can provide the following links to those interested in reading about it:

http://www.ccfa.org/info/about/crohns
http://www.ccfa.org/info/about/ucp

And just so I'm clear, this is not a 'pity me' topic. It is to increase awareness of these diseases so more people might understand and support the topic at hand. Also, while the above links provide the most honest information I've seen, it does not particularly pertain to everyone with the disease. Like most diseases, not everyone's case is the same and not everyone has the same symptoms.

For example, in my case I'm a part of the small percentage that have it in the opposite intestine, or otherwise indeterminate. Most of my problems are centered around my open ulcers, as that means bleeding, and in my case anemia. I also happen to be allergic to the medical steroids they usually prescribe to help heal them faster, so I require a lot of pills everyday and an infusion every eight weeks to help me enter or stay in what they call remission, which is a time where my disease isn't acting up as severely as it usually does.

Anyways, as I said in my first post, people are being diagnosed younger and younger. What's worse is not a lot of people know about it or how to treat it. And the treatment they do have is rather limited by age, almost all the current treatments are for adults, in some very rare cases young adults if no other treatment works. So this leaves a lot of young children with this disease that cannot receive treatment, and therefore have to suffer. And because these diseases are also auto-immune, they are extremely susceptible to other illnesses, especially after just receiving any treatment.

Because of this, a lot of children are becoming isolated and reclusive, staying at home all the time because they don't want to get anymore sick or deal with inconsiderate peers. And this can lead to depression, which in fact has been recently studied and linked to Crohn's. Unfortunately, those with Crohn's and ulcerative colitis have been proven to be more likely to commit suicide. This was based on those who attempted, and those who succeeded. They're actually beginning to link depression to these diseases because of recent studies regarding non-terminal illnesses and suicide.

In other words, this is serious stuff and needs increased awareness. As I stated before, I was diagnosed at fourteen. But honestly, I was showing signs and symptoms from a very young age - I had even been hospitalized a few times, but they could never figure out what was wrong with me. There are so many cases out there where diagnosis comes so late, that it becomes more difficult to treat, like in my case. I just don't want people to have to go through everything I had to, and not knowing they might have these diseases and have complications when they finally do get treatment.

And again, not everyone's case is the same. There are more people with much more minor cases, which is why it's so difficult to diagnose before it really flares up. I have a friend who also has Crohn's, but didn't know until he told me because he was diagnosed and treated early in life, so he never had to face any of the severe symptoms. I only wish it could be like that for everyone, that's why I want to spread the word and share as much information as I can.

Posts : 372

Yeah. Nuclear, google that act, it was approved/passed by the Senate on December 3, 2011. So do your research before you start calling names.

Anyways, Crohn's is pretty serious.

Age : 31 Posts : 8965

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