NoahsMommy
08-21-2005, 04:11 AM
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 :)
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 :)