Posts tagged ‘Crohn’s and Colitis Foundation of America’

#ThisIsIBD: Andrea

When I sought out stories for my recent Huffington Post piece to illustrate life with IBD, I received an incredible amount of personal stories from people living with Crohn’s disease and ulcerative colitis, too many to fit into the 1,000 word limit I had for my piece. In observance of Crohn’s and Colitis Awareness Week, I am going to share the additional stories on my blog throughout the week.

10807_10101299192115462_2027024958629790806_nFirst up, my friend Andrea from The Great Bowel Movement.

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December 2, 2014 at 10:15 am Leave a comment

#ThisIsIBD

This post originally appeared on the Huffington Post; however the stories included below are the full versions and not the ones that appear externally.

December 1 marks the start of Crohn’s and Colitis Awareness Week, an important week within the inflammatory bowel disease (IBD) community to bring attention to Crohn’s disease and ulcerative colitis (UC), two debilitating digestive diseases that cause crippling abdominal pain, persistent diarrhea, rectal bleeding, and weight loss.

More than 1.4 million Americans live with these diseases, yet most people are unfamiliar with them, thinking that IBD and irritable bowel syndrome are synonymous, or downplaying the symptoms.

“One of the most challenging things is that every patient’s disease is different,” says Rick Geswell, president and CEO of the Crohn’s & Colitis Foundation of America. “We know that what works for one patient, may not work for another. And it’s so unpredictable. Some patients are so sick that they can’t even leave their homes. Others may have mild disease for most of their life and then all of sudden they flare and land in the hospital. That’s why it’s so important for all patients to rally together — especially during awareness week.”

As Geswell says, it’s hard to grasp the reality of living with these diseases. So in order to explain what it’s like have an inflammatory bowel disease, I asked several patients to share their experiences.

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December 1, 2014 at 4:03 pm Leave a comment

CCFA CEO Addresses Hot Button IBD Issues

There are many hot button issues related to inflammatory bowel disease and when I met with Rick Geswell, president and CEO of the Crohn’s and Colitis Foundation of America, I took the opportunity to address two of them- the use of the word “cure” related to ulcerative colitis patients, and mortality associated with these diseases.

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October 28, 2014 at 3:30 pm 1 comment

Microbiome & IBD: The future of treatment?

When I sat down with Rick Geswell, president & CEO of the Crohn’s & Colitis Foundation of America (CCFA) in September, I knew the conversation would focus primarily around CCFA’s Genetics and Microbiome Initiative. I had seen the video that CCFA put out but beyond that, knew very little about the two initiatives and definitely had no idea how microbiota are linked to Crohn’s disease and ulcerative colitis. But what I learned about it is fascinating.

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October 17, 2014 at 2:57 pm 1 comment

Meet Rick Geswell, CCFA President & CEO

As many of you know, I am a big supporter of the Crohn’s and Colitis Foundation of America (CCFA). I am an alumnus of its Take Steps and Team Challenge programs, sat on the board of its Connecticut Chapter, and I am currently helping its New York City and Fairfield/Westchester Chapters develop communications strategies. I believe that they are the organization that has the most amount of clout in the inflammatory bowel disease (IBD) field and has the ability to create the most change and bring us closer to finding a cure for Crohn’s disease and ulcerative colitis.

I recognize that there is some discontent in the IBD community over how CCFA engages with them. There have definitely been times when I have been unhappy with how they have responded to a certain article, their use of levity about a serious topic (clown shoes in the Escape the Stall campaign), and how slow they are, at times, to jump on the bandwagon with social media campaigns. That being said, with a $70 million budget, they remain the biggest player in the IBD world. Therefore, I believe that, regardless of your personal experiences with CCFA, it is an organization that we all should rely on for the well-being of those with Crohn’s disease and ulcerative colitis.

I was recently given the opportunity to sit down with Rick Geswell, president and chief executive officer of CCFA, to learn more about him, about CCFA and its initiatives, the future of the organization, and the future of IBD treatment. I will be relaying my interview with him over several blog posts in the near future and to start, here is the first in the series- Meet Rick Geswell.

Disclaimer: The details I am reporting below are directly from Rick Geswell of CCFA and do not represent my personal beliefs (although many are aligned). If you want to know if I agree with something, please feel free to ask me in the comments or email me at caringforcrohns@gmail.com.

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September 11, 2014 at 12:06 pm Leave a comment

Raising Awareness One Day at a Time

Happy Crohn’s and Colitis Awareness Week everyone!

Today marks the beginning of Crohn’s and Colitis Awareness Week 2013 and more than ever, I can’t stress the importance of this week for raising awareness and educating others about inflammatory bowel diseases.

Before Dan was diagnosed, I didn’t know much about IBD. In fact I was one of those people who thought IBD and IBS were one in the same (I now know that they are most definitely not).

In the almost seven years since Dan was first diagnosed with Crohn’s disease, I have learned more about these debilitating diseases than I ever imagined I would. I have witnessed the good and the bad- colonoscopies, hospitalizations, surgeries, medications, tens of thousands of dollars in medical bills- you name it, Dan and I have been through it.

I have also been able to raise awareness and educate others who knew nothing about the disease learn about why Crohn’s disease and ulcerative colitis are not just pooping diseases. Through Team Challenge and Take Steps, over the past three years Dan and I raised over $21,000 for research and education of Crohn’s disease and ulcerative colitis.

But I’ve also had the pleasure of meeting incredible people who are battling these diseases and have become my second inspiration for raising awareness.

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December 1, 2013 at 12:45 pm Leave a comment

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