Posts filed under ‘General’

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.

February 28, 2013 at 4:44 pm Leave a comment

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!

January 11, 2013 at 12:44 pm 1 comment

Caring for Crohn’s & UC: Year in Review

This has been a great year for Caring for Crohn’s, both on the blog and personally.

After toying with the idea for several months, I finally launched the blog in June. After a few months on Tumblr, the blog was merged onto WordPress and now here we are!

In just six months, I wrote 73 posts and the blog received over 3,600 views, and gained 19 WordPress followers, 50 Tumblr followers, 124 Facebook fans, and 175 Twitter followers. Thank you all SO much for your readership and support– this blog branched out beyond my wildest dreams and I am so appreciative of all of you who made that happen.

Photo on 12-31-12 at 3.45 PM #2

Without further ado, here are some of the 2012 highlights for Caring for Crohn’s!

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December 31, 2012 at 3:49 pm Leave a comment

WordPress’ 2012 in review for Caring for Crohn’s

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,800 times in 2012. If it were a Dreamliner, it would take about 7 trips to carry that many people.

Click here to see the complete report.

December 30, 2012 at 10:12 pm Leave a comment

A Holiday Wishlist for Crohn’s & Colitis

Living with IBD, whether you are the patient or the caregiver, is taxing on everyone. I’m sure you have wished for something to help with the burden- from financial assistance to new medication and everything in between.

Every year, children (and some adults too) around the world write up their wishlist for presents for the holiday season. In that vein, here is a holiday wishlist for Crohn’s Disease and Ulcerative Colitis.

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December 23, 2012 at 9:13 pm Leave a comment

Thank you for your support!

This morning, I got the most wonderful surprise in my email box. Someone had commented on my blog (that in its own is exciting for me) and nominated me for a Reality Award! I am mighty excited about this and want to thank Lauren from The Caged Bird Still Sings for nominating me for this award. I humbly accept it and am so grateful to be part of this big blogging community that supports one another through the good and bad times.
reality-award1

 

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December 17, 2012 at 7:55 pm 1 comment

New Site Feature!

Today, I launched a new feature to Caring for Crohn’s- a listing of IBD specialists across the country. There is now a tab on the menu on the top of the page that reads “IBD Doctors“. If you click on that, you can view doctor listings by each state.

Some states do not have doctors listed- that is because I used U.S. News & World Reports rankings of Top Doctors and there weren’t any listed for that state. However, that doesn’t mean there aren’t any great IBD doctors in that state!

If you know of any that aren’t listed, please email me at caringforcrohns@gmail.com.

There is nothing more important that having a doctor who is extremely knowledgeable in IBD and is helpful and listens to your concerns. I hope you find this new page helpful!

December 17, 2012 at 2:01 pm Leave a comment

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The Caged Bird Still Sings

Striving to be content with the life I have been given, instead of the life I had imagined

Brian Greenberg

Documenting the life of an IBDer, Non-profit Founder/President, Financial Advisor and Triathlete.

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Just a guy living life with Crohn's Disease.

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Caring for a loved one with Crohn's Disease & Ulcerative Colitis

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