Author Archive
Final Installment of the ABC’s of Crohn’s & UC: “T,” “U,” “V,” “X,” & “Z”
It’s hard to believe that we’ve come to the end of the alphabet and thus the end of my ABC’s of Crohn’s & UC series. After this post, I will compiled all of the previous ones into a page on the blog so you can easily access this glossary I’ve compiled about IBD. Additionally, if I’ve missed anything important for any letter, please let me know!!! I would love to keep adding to this list and eventually turn it into something to help explain these diseases to those who are unfamiliar.
That being said, here is the final installment: T, U, V, X & Z.
CCFA Responds to IBD Community Criticism of New Ad Campaign
Today, I was emailing with my local CCFA chapter staff about how so many folks in the IBD community are disappointed by the new ad campaign, Escape the Stall.
She reached out to the national office to express how folks were feeling and to find out how they chose the bathroom stall as the focus of the campaign.
Here is the response that CCFA’s National Marketing Director sent back. One thing to note is that CCFA did focus groups with both patients and non-patients and both groups liked it during the groups. I know many of you still won’t be happy with the campaign but I hope it at least answers some of your questions.
WHY A BATHROOM?
It’s a fair question. Some people think of IBD as just one thing (going to the bathroom frequently), but it’s actually a lot more complicated. And sinister.People with IBD have to deal with debilitating pain, agony, and discomfort, as well as embarrassment. It’s not the same for different people, and it’s not consistent (some people have some symptoms, some one).
The campaign utilizes the bathroom for a simple reason: it’s easy to recognize. And sympathize! It helps people understand how difficult it is to live with IBD, while reminding people living with IBD that there’s no reason to hide a normal daily activity. That’s what this campaign is all about.
THE BATHROOM STALL IS A LITTLE OFFENSIVE. COULDN’T YOU HAVE MADE THIS ANOTHER WAY?
It was never the intent to insult anyone, or to belittle the condition. But talking about IBD is not easy. It’s already a difficult subject, rife with embarrassment and secrecy.By putting “the bathroom issue” front and center, we wanted to engage people, raise awareness, and demonstrate our commitment and compassion. All of CCFA is committed to battling this serious condition on multiple fronts.
And as one of our supporters (and IBD sufferers said), “If we can’t stand up to this condition, and be able to laugh at ourselves, we can’t expect others to.”
THIS CAMPAIGN DOES A POOR JOB AT EXPLAINING MY EXPERIENCE WITH IBD!
We understand that not everyone is going to agree with a provocative campaign like this. We expected for some people to disagree with the imagery but we have really worked hard for the past year to create a memorable campaign for the general public who know very little about these diseases. If we are successful in gaining support, we all benefit. Our primary goal for this campaign is to raise funds for research and that can only happen through public awareness.
Caring for Crohn’s Affordable Care Act Primer Part 3:
In the third installment of the Caring for Crohn’s Affordable Care Act Primer, I explore the aspects of the law that affect those 65 and older.
The Affordable Care Act is designed to strengthen Medicare, make preventive services affordable, and close the “donut hole” (discounts on medications that fall in the coverage gap.
CCFA’s New Ad Campaign: A bold, honest approach to raising awareness
I think I might be in the minority when I say that I think CCFA’s new ad campaign is brilliant.
I understand why some folks aren’t fans of it- it makes it look like IBD patients spend a lot of time in the bathroom. But the reality is that they do. That’s a fundamental thing that people don’t understand about the disease.
Attention NYC-area IBDers: Awesome Vintage Clothing Fundraiser Feb. 18-20
I cannot tell you how excited I am to tell you about this AWESOME fundraiser next month.
My brother-in-law’s girlfriend and her twin sister have their own awesome vintage clothing line called The Vintage Twin. They rework vintage pieces. But what’s even cooler is that each piece is unique – there is only one of everything.
Well, The Vintage Twin holds pop-up shops in NYC throughout the year and gives 10 percent of the proceeds to a charity. In the past, they’ve donated to Hurricane Sandy Relief and to Autism Speaks. Well, from February 18-20, The Vintage Twin is holding their next pop-up shop and donating 10 percent of the proceeds to the Crohn’s & Colitis Foundation of America (through my annual fundraising efforts for them). This is a special event for The Vintage Twin as well because their uncle has Crohn’s Disease.
How awesome is that!
So if you live in NYC, CT, or NJ, or want an excuse to road trip out to the east coast to buy some awesome reworked pieces and give to CCFA, here are the details:
WHEN: February 18 (President’s Day) – February 20 from 12 – 9PM all three days
NOTE: I will be at it on the 18th and would love to meet all you Tri-State IBDers!
WHERE: 45 East 34th Street, 3rd floor, Between Park and Madison, NYC
Hope to see and meet a lot of you there!
The ABC’s of Crohn’s & UC: “R” & “S”
I can’t believe we are almost at the end of the alphabet! There will be one or two more posts after this one and then my glossary of Crohn’s & Ulcerative Colitis will be completed. But before we get to that point, we have a few more letters to get through.
Tonight, we tackle R & S.
Caring for Crohn’s Interviews Oak Park Behavioral Medicine
I recently had the opportunity to ask Dr. Tiffany Taft and Stephanie Horgan of Oak Park Behavioral Medicine some questions for Caring for Crohn’s and I am very excited to share the interview with everyone.
From L to R, Dr. Tiffany Taft & Stephanie Horgan
Oak Park Behavioral Medicine, located in Oak Park, Illinois, specializes in working with adults and children living with chronic medical illnesses. Dr. Taft and Stephanie are experts in the psychology of digestive illnesses, including IBS, Crohn’s Disease, Ulcerative Colitis, and Eosinophilic GI diseases, but also treat patients with other chronic illnesses.
What’s even more unique about this practice aside from the focus on treating patients with chronic illness is that both Dr. Taft and Stephanie are fellow Crohnies!
Read on to hear about their practice and how they help improve the psychological health of IBDers.
Caring for Crohn’s Affordable Care Act Primer Part 2: Insurance Choices & Costs
In this second installment of the Caring for Crohn’s Affordable Care Act Primer, I explain the provisions of the law designed to increase affordability and accessibility to health insurance.
Caring for Crohn’s Affordable Care Act Primer Part 1: Consumer Rights & Protections
The more I write and talk about the Affordable Care Act, the more I realize people actually are not that familiar with the specific details of the law. I will do my best to summarize the important parts and provide you with the implementation dates. However, for real specific questions, you should visit www.healthcare.gov– it’s an invaluable source providing all the information you could ever want on the law. It’s also where I got all of the information below from.
Because the law is so massive, I will be breaking this down into several posts by category: consumer rights and protections, insurance choices and cost, senior services, and employers. Today’s post will address provisions related to consumer rights and protections.
The ABC’s of Crohn’s & UC: “O” & “P”
We are over halfway done with the ABC’s of Crohn’s and Colitis series! I hope it’s been informative thus far for those who have been following along.
Next up in the ABC’s of Crohn’s and Colitis series: O and P.
Caring for Crohn's & UC 