World Rare Disease Day


Today is World Rare Disease Day.  One of the first things I thought when I heard this was, “Do I fall in this category?”  Yes I have a disease but is it considered a rare disease?  Just because so many people have no idea what IBD is doesn’t necessarily make it rare.

According to the National Institute of Allergy and Infectious Diseases (NIAID), a division of the US Department of Health and Human Services that accumulates and publishes the statistics for Crohns disease and other health problems, one in 500 people suffer from Inflammatory Bowel Disease (IBD), the group of diseases that includes Crohns syndrome and ulcerative colitis. The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) reports similar numbers. Approximately 544,000 people suffer from IBD in the United States. There are typically three or four new cases per 100,000 people reported annually.  – Article Source: http://EzineArticles.com/289309

Looking at those numbers, 1 in 500 people suffer from IBD, I would say no.  But go online to a social media site like Twitter and anyone with IBD is proudly letting everyone know they are celebrating the day.  As much as I love advocating for my disease and help bring awareness to it, is it right to drown out others trying to raise awareness for really rare diseases?

As I was pondering this at 8:00 in the morning, I was forwarded an article found here http://bites.today.com/_news/2013/02/27/17121375-restaurant-to-non-patron-you-must-pay-to-pee?lite  This isn’t necessarily about any illness but anyone with IBD understands the problems with this kind of thinking.  And that leads into how so many people don’t know about IBD. 

So is it a rare disease because people don’t know about it?  About 10 years ago most people probably didn’t know what HPV was.  Now it is known that it is the main cause of cervical cancer.  It wasn’t a known disease yet it was far from rare as it was determined that almost everyone that has had sex has at one point in their life had the disease.

I talk to a woman online who is pretty big in the IBD community.  She suffers from a condition that causes inflammation all over her body.  Everyday is a challenge for her.   No one even knows how to treat it at this point because not that many people suffer from it.  To me, this is a rare disease.  This is something we should spend the day talking about and educating people on.

I love advocating.  I love everyone I have met doing it.  I talk to so many great people who have decided to speak up for IBD.  We have a big community and we are becoming very vocal.  But are we rare?  I wish I could say yes, but we aren’t.  I think we need to put our needs aside for one day and focus on those that really need help, because with rare diseases, there is little help out there.  There are almost little amounts of treatments available and even less cures.  For us with IBD we have a lot of options, even if they aren’t helpful.  There are many that suffer with no treatments available.  Today I will think of them and hope for some help.  It is the least I can do.

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