Posts filed under ‘Advocates’
Health Activist Writer’s Month Challenge- Days 1 & 2
I’m a little late to the game (by one day) but I am going to try to participate in WEGO Health‘s challenge this month. April is Health Activist Writer’s Month and brings the official Health Activist Writer’s Month Challenge. Every day, health bloggers and other online writers will get a prompt and I will explore the different topics on here as often as I can. That being said, here are my posts for Day 1 and 2!
Happy Rare Disease Day!
Today, February 28, is being celebrated as Rare Disease Day, an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.
According to the day’s website, this year’s theme is “Rare Disorders Without Borders,” with
“the goal to convey the global solidarity of the rare disease community. Rare disease patients all over the world face many of the same medical, social and economic challenges. Together, in solidarity, the global rare disease community is determined to build a better world for patients.”
In observation of this day, here are some facts about rare diseases that I found particularly interesting:
FACT: There are more than 6000 rare diseases that exist.
FACT: Rare diseases affect more than 30 million people in the US, about 1 in 10 people.
FACT: It is estimated that 350 million people worldwide suffer from rare diseases.
FACT: If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
FACT: Approximately 50% of the people affected by rare diseases are children
FACT: A rare disease is classified as one where there are less than 200,000 Americans with the specific disease.
FACT: There are several digestive diseases that are considered rare diseases including Celiac Disease, Crohn’s Disease of the esophagus, Collagenous Colitis, Gastritis, Ulcerative Proctitis, gastroparesis, Eosinophilic gastroenteritis, Menetrier disease, Whipple disease, diverticulosis, and many more.
FACT: According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment.
FACT: There are fewer than 400 approved treatments for all rare diseases
FACT: Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
Running for a Cure
For the past several years, I’ve heard amazing stories about people participating in the Crohn’s and Colitis Foundation of America‘s Team Challenge half marathon program. For those who don’t know, Team Challenge is a half marathon training and fundraising program. Team Challenge participants “train with professional coaches and like-minded teammates for a rewarding and exciting 13.1 mile endurance event at one of our great destination races while raising vital funds for research into these diseases. Funds raised help make new treatments possible and fuel the search for cures.”
Sarah Choueiry Talks About Her Journey With Crohn’s
For those active in the Crohn’s blogging world, you’ve come across Sarah Choueiry at one point. Sarah is the amazing person behind the My Journey with Crohn’s blog, which recently became a non-profit!
Below, Sarah talks about her Crohn’s journey and how she came up with the idea for her foundation, as well as its goals.
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.
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.
Jennifer Jaff, Patient Advocate, Passes Away
I am a little late in posting but last week, a great advocate for chronically ill patients passed away from complications with her Crohn’s Disease. Jennifer Jaff, 55, was executive director of Advocacy for Patients. She was first diagnosed with Crohn’s when she was 19. She had eight operations to treat her disease and during one 12-year-period gained 120 pounds while on steroids.
Ken Baumann (Ben on Secret Life of the American Teenager) talks about his Crohn’s Disease battle
Ken Baumann (Ben on Secret Life of the American Teenager) talks about his Crohn’s Disease battle
Famous Crohnies – Olympic Edition
I’ve been toying with the idea of making a list of famous people with Crohn’s and Colitis for awhile now. There’s no better time than now to do it with the Olympics starting this weekend.
First on my list is Olympic kayaker Carrie Johnson. Carrie was diagnosed with Crohn’s Disease before the 2004 Olympics.
“It started with symptoms of fatigue and it kind of escalated to increasingly worse GI (gastrointestinal) symptoms,” Johnson said.
Carrie participates in the flatwater sprint- a two-minute race. Obviously while you are in the middle of water in a tiny kayak, having a Crohn’s episode is your worst nightmare.
Caring for Crohn's & UC 