Would You Join Me?? Letter Writing for Crohn's

Hey guys,

I've been a member of the Crohn's and Colitis Foundation of American ever sinse I was diagnosed over three years ago. They are amazing...they raise a ton of money for research and keep people up to date on IBD.

They're trying to get a bill passed in congress that "proposed legislation would dramatically expand IBD research at the National Institutes of Health, with a focus on pediatric research."

Pediatric research is VERY important to me. My personal goal is to help them find a cure for Crohn's...especially for the children that get it. Its horrible for adults, but because IBD causes severe malnutrition, it causes HORRIBLE developmental problems for these kids. I hate having the constant pain...it limits me so greatly, and is threatening to ruin my spirit...but I'm an adult and can "understand" it. Its embarressing for me (I got sick at 18)...but for kids? Wow...its horrible. :(

My goal is to become a GI...with a lot of emphasis in research. I'd so love to help in curing this...and other bowel diseases.

Anyway, they need letters written to our congressmen/women so they support the bill when its up for a vote. Would you be willing to help??

Here's a link on how to do it...what to write...and who to send it to: http://www.ccfa.org/advocacy/writeletters

I'd really appreciate any help you can offer. I know it wants letters talking about your personal experiences, but you are MORE THAN WELCOME to use what I've shared here...as what you've seen Crohn's do.

Just a quick summary of my disease:
Age 18 - developed a VERY painful anal fissure

Age 18 to 24 - developed constant diarrhea, making me severly underweight and malnurished

Age 20 - first surgery to "correct" my fissure, which has become chronic - it didn't work and was horribly painful

Age 21 - developed aversion to foods and alcohol. Had almost constant stomach pains and nausea

Age 21 to 22 - first hospital visits, after meeting more than my fair share of horrible "butt doctors", I was led to my wonderful GI

Age 23 - after more hospital visits and a ton of tests, got a diagnosis of Crohn's and Colitis (IBD). Became severly anemic and required almost monthly iron transfusions. Still severly underweight.

Age 23 to present - After 13 hospital visits in 2005 (Jan - June) alone and many prior to that, I decided to go to the IBD Center at Cedars-Sinai. I'm LUCKY to have them so close to me. After a few more super-fun tests, I decided on a ilio-colic resection (small bowel) and am currently recovering from that.

Crohn's is trying really hard to ruin my life. I've lost a marriage, jobs, friends, family, etc. because of it and its symptoms. I've lost precious time from school and my goals. I'm a strong person and if it weren't for my faith, I'd be a very unhappy person.

Please, if you have the time and energy, can you write a letter or two to your local congress people?

Thanks so much for reading and considering this.

Hugs,
Kelly :)

OK, I just sent mine... :)

Kelly, even if I cannot help you with a letter (I think it is only for US), I would just like to support you a little bit with this message.

I am a researcher and I know the disease quite well for having doing research on it during my PhD. I did not meet patients but I worked in close collaboration with gastroenterologists, and I can (try to) imagine how painful and disabling this disease is.

The American Crohn's and colitis foundation is doing a great job and very good research and it is very good they have the support from many people, patients or not. The same kind of Foundations also exist in several european countries. Research is progressing fast but IBD pathologies are relatively new and still need a lot more research.

Your involvment is fantastic and you look very strong. I'm sure you will get great help from people here. ;)

Hugs,
Sonia :)

I would be glad to send a letter to support Crohn's research. One of our best friends nearly died of it when he was only 29, thank goodness a sharp radiologist caught a glimpse of his x-rays and hospitalized him immediately for surgery. He's still around today to be Dad to his four kids because of that! I do hope you ae feeling better, what an ordeal to go through. I don't "do" pain well, and I can't imagine the constant pain of Crohns. Your appeal opened my eyes to the fact that children suffer from this, too. I thought it only affected adults. May God bless your efforts on their behalf!

*OK, I downloaded the sample & will send it tomorrow-

kelly I am sorry I am unable to write as it is only for US citizens, but you know I would if I could, I am with you 100 per cent, and understand how debilitating and horrible this disease is, GOOD LUCK kelly and thank you for sharing this in the hope to help others. I wish you all the best with this and your recovery.:)

Kelly, I will be happy to write a letter. You are always in my thoughts and prayers. (((hugs))) -Tonya

Kelly I wish I could help by writing a letter too but I don't think they will take into consideration someone's letter from outside the country. I know you will get lots of help from those PT members from within the U.S. Good Luck sweetie and keep on feeling better.


(((HUGS)))

Michelle & the girls

You guys are so great, thank you....soooooo much.

Thanks for my non-American friends as well. Your support means so much to me. There's NO WAY I'd be able to remain positive without your care and support.

((((((Hugs)))))))