Author Archive
Health Activist Writer’s Month Challenge Day 4
Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!
This is definitely an interesting post for me to write. When Dan was first diagnosed six years ago, I didn’t look for resources- I was just his girlfriend and the bulk of his care wasn’t going to be my responsibility. I lackadaisically went about caring for him and just assumed that how he was feeling was normal for the diseases. Of course I was wrong and, in retrospect, I probably should have taken the initiative to look at resources and different things I could do to help him cope with the disease.
That being said, here is a list of the best resources that have helped me in the three and a half years that we’ve been married:
Crohn’s and Colitis Foundation of America
Health Activist Writer’s Month Challenge Day 3
Post a picture that symbolizes your condition and your experiences.
Here is what I thought was a good one for symbolizing Crohn’s disease and my experiences with it:
I know I’m not supposed to use words but I want to elaborate a tiny bit as to why I picked this image.
Living with Crohn’s is a constant battle of ups and downs. I can attest to that. Dan has gone through good periods and bad ones and there is no rhyme or reason as to when they occur. It can feel like we are on a roller coaster ride- going up a hill to get to remission, plateauing when he feels well, and then plummeting when his Crohn’s acts up.
This picture also represents how there are highs and lows emotionally with Crohn’s disease- happy when you are feeling well, scared when something is wrong, and sad when the disease interrupts your life.
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!
Attention Tri-State IBD-ers: Great Education Program in CT This Weekend!
This is going to be a fantastic education event! Speakers include Dr. Jack Chuong (Digestive Disease Associates), Dr. Dinesh Pashankar (Yale Medical Group), Dr. Francisco Sylvester (CT Children’s Medical Center), Dr. Sandra Escalera, Dr. Joel Garsten (Digestive Disease Center of CT), Dr. Harry Schwartz, Dr. Phil Ginsburg (Gastroenterology Center of CT), Dr. Yanni Oikonomou (Yale Medical Group) and Dr. Michelle Smedley (Connecticut GI).
Topics to be covered include IBD in children, nutrition, medical & surgical care for adults, novel therapies, and support groups.
And the best part of it all- it’s free!
Make sure to RSVP and check it out if you are around this weekend in CT.
Celebrating Passover without the Matzah
I’m sitting at my parent’s house in New Jersey waiting for the first Passover Seder to start and I started thinking about Passover, food restrictions and IBD.
Passover is, hands down, the worst holiday for people with inflammatory bowel disease. The lack of bread and the sheer amount of matzah we consume is a double whammy and definitely makes for terrible bouts of constipation, even in those without stomach issues.
It’s New York’s Turn to Pass the Restroom Access Act
Last year, Massachusetts became the 13th state to enact the Restroom Access Act, joining the ranks of Colorado, Connecticut, Illinois, Kentucky, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin and Washington. As I wrote previously, the Restroom Access Act requires retail establishments to allow people with certain medical conditions (including Crohn’s disease and ulcerative colitis) access to their employee only restrooms if a public one isn’t available.
Several other states are starting to look at enacting the Restroom Access Act, including New York. It’s about time!
The New York bill was introduced by Assemblywoman Amy Paulin and referred to the Assembly Health Committee. Unfortunately, it hasn’t made any movement in that committee since it was referred there in February.
Team Challenge Training Update #1
A few weeks ago, I wrote about how I decided to participate in CCFA’s Team Challenge half-marathon program this year. I wanted to provide you all with an update as to how I am doing with the training and fundraising!
I am astounded by the amount of sheer support I have received, both financially and emotionally, from my friends and family as I embark on my half marathon training program! Over the past month, I’ve raised over $4,700 towards my goal of $5,000. It is so humbling to see how many people out there really support the cause that is so close to my heart and Dan’s belly.
IBD & Migraines: Increased Risk?
Did you know that people with inflammatory bowel disease may be at a higher risk for migraines than those without the diseases?
That’s what a new study from researchers at Columbia University are reporting.
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.
Caring for Crohn's & UC 