Archive for February, 2013
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.
Come Friday, Patients Will Begin To Feel Impact of Sequestration
Sequestration is the buzz word lately.
With the $85 billion in spending cuts set to hit the government, and subsequently all Americans, March 1, it’s time to learn how this will really impact health care.
The unfortunate thing is that there are very few real details out there about the sequester, and as we all know, the devil is in the details. All that is available is estimates as to how it will impact federal agencies and the states as a whole. But there’s no doubt that health care in the country will suffer if our leaders don’t figure things out by Friday.
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.”
REMINDER: Next Week, NYC Open Bar/Pop-Up Shop to Benefit the Crohn’s & Colitis Foundation of America
Do you like alcohol and vintage clothes? Live in the NYC area?
If so, make sure you come to The Vintage Twin‘s Open Bar & Pop-Up Shop NEXT WEEK! Ten percent of the proceeds from the three-day pop-up shop will go to the Crohn’s and Colitis Foundation of America! And since it’s President’s Day and many people are off, what can be better than a Monday Funday?
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.
IBD Medical Terms in Plain Language
I was going through my Twitter feed the other day and came across something from Care Novate Magazine, an online resource that provides information on caregiving, social media and medical literacy. It’s a really cool idea and I spent awhile going through the site, which is how I came up with this post.
The most difficult part of living with a chronic illness like IBD is understanding what your doctors tell you. No matter how hard they try, medical jargon is still used in explanations, and a lot of the time, patients and their loved ones don’t fully understand what’s going on.
Interview with Reid of Wanted: Crohn’s End
Earlier this week, I came across WANTED: Crohn’s End on Twitter and was intrigued by the name alone. After clicking to view the profile, I learned that there’s a person behind the Twitter handle- Reid Kimball- and an exciting project to raise awareness of Crohn’s disease and the alternative methods people try to treat it.
According to its website, WANTED: Crohn’s End is a documentary about empowered patients with Crohn’s disease or ulcerative colitis who use controversial alternative treatments when nothing else works. They have listened to their gut, and took a proactive approach to ending their condition despite mainstream medicine saying there is no cure.
Below, Reid answers questions about his journey with Crohn’s, the documentary, and how you can get involved.
Family Medical Leave & IBD
When Dan had his blockage in 2011, I was just starting a new job. I was four months in and hadn’t been there long enough to be able to take much time off. I was lucky that my employer allowed me to alter my schedule for two weeks to work from home and take time off to take care of Dan, but not all caregivers are as lucky as I am.
For those who don’t have flexible options for time off to take care of a loved one, there’s the Family Medical Leave Act.
Caring for Crohn's & UC 