Wednesday, February 29, 2012

#1 - Rare Disease Day

Hi All, 

Welcome to the first Chiari (kee-AR-ee) Blog Carnival celebrating Rare Disease Day! Since Arnold Chiari Malformation is listed as a rare disease, we felt it appropriate to celebrate by hosting our first blog carnival.  

When one is given a diagnosis of cancer, diabetes, asthma, arthritis, heart disease, HIV or a host of other conditions they can readily find others willing to lend encouragement or support.  They can find medical professionals locally who are well versed in their ailment.  Those of us with rare conditions often find ourselves teaching the medical professional about our condition.  We can't always rely on the medical community to know, instantaneously, what treatment options are available to us.  We know that our condition isn't necessarily any worse than these other conditions.  We just want others to understand our condition, to realize that it is frustrating to have explain our condition and that we can often feel alone or neglected.  We don't get to wear a ribbon and have people understand what we suffer from.  Even after we explain it we are often met with empty or confused looks.  Sometimes, we can even feel like lab rats when doctors or specialists hover over us.   

A diagnosis of Chiari is lifelong. It becomes a battle of symptom management. A trial and error of medication and treatments.  Typically, we battle a host of other diagnoses and, frequently, depression is a challenge that we will face. We will never be big enough to start a revolution; but, we are starting to find our voice.  It's a voice of strength, of heartache, of determination and of pain. Luckily, we are starting to find our place.  

We want to tell you our stories.  We want you to listen to us.  Not pity us.  Please feel free to ask us questions.  We want you to understand and we know just how confusing it is.  When we talk about the struggles and the pain, we don't expect you to feel bad for us.  We just want to know you care.  Sometimes, just maybe, we don't even know what to do with ourselves; but, having someone we know we can rely on keeps us going.  It keeps us trying for a better tomorrow.

We would like to kindly ask you to take some time and read the following blogs.  Get to know who we are and what living with this condition is really like.  Join us on our journey every month here at the Chiari Blog Carnival.

April, mother of 2, talks candidly about her diagnosis in her post 1st Annual Chiari Carnival on her blog Zipperheads: Living with Arnold Chiari Malformation.

At Life on Skype, Renee (a.k.a. Shalunya) shares her colorful pre-surgical decision with us at My Rare Disease.

Carolyn, one of the chosen few with Chiari, asks of if we are Jealous of her Rare Disease over at Chiari type 1 Malformation!

Twelve year old Kyle provides a great perspective on Living with a Rare Disease on his blog Kyle's Chiari Malformation Battle.

In Rare Form new blogger, Heather, talks about her Life with DisAbilities for our first Chiari Blog Carnival.

Misty gives a great Refresher Course on the challenges of living with this condition on her blog Day with Chiari.

At Chiari Life, Alicia (a.k.a. BearlyBurnt) helps us celebrate Rare Disease Day by reminding us to keep moving forward.

Thank you so much for sharing your time, broadening your understanding and opening your heart to us.  Each patient and family that suffers with this rare condition appreciates it deeply.

Wednesday, February 22, 2012

So what is a blog carnival?

If you have arrived at this blog you are probably a fellow Chiarian interested in joining us for a blog carnival.  So, you are asking yourself, “What is a blog carnival? How do I participate?'”  A blog carnival is a circle of bloggers that write on a specific topic once a month.  Blog authors participate by writing a blog post about the specific topic and publish their post on the same day.  Then an article is written about all the blog posts and that article is published anywhere online that will allow us an opportunity to post.  My goal as blog carnival ringmaster will be to select the topic (I am ALWAYS open to suggestions), coordinate the publish date, write the main article to include links to all the participating blog posts, and keep the momentum going each month. Our first ever carnival will be held on Rare Disease Day, February 29, 2012.  My first goal is to see if it is possible to have our article posted on websites that could provide us with some level of visibility to other fellow Chiarians.  

Each one of us knows how frustrating it can be to live with Chiari.  We also know that it can feel very lonely when you have a rare, chronic condition.  We all have those moments when we feel like no one understands and that we are all alone when fighting this condition. This is our opportunity to unite and to stand together with a clear voice saying “We are here and we have Chiari.”

If you would like an opportunity to see just how a blog carnival works check out these great examples. Jenni over at produces a great monthly carnival.  This months topic You are loved! ChronicBabes! is devoted to the special people that support women with that suffer from chronic illness.  The Writing Reader hosts their Carnival of Creativity promoting creative writing and writer.  The Math Hombre produces Math Teachers at Play blog carnival which is a great resource for teachers of math, of course. :)

I would love to have great participation for the first Chiari Blog Carnival. It doesn’t matter if you are a seasoned blogger or brand new, you have a valuable voice and we would love to include your post.  If you are interested please email me at or comment below. An email will be sent to you regarding the specifications for participating in the carnival.  Carnival posts must be published to your own blog by noon EST on February 28, 2012. 

Sunday, February 19, 2012

Rare Disease Day

Please join us for the kick off of the Chiari Carnival on February 29, 2012, Rare Disease Day. Since Arnold Chiari Malformation is a rare disease, we could think of no better day to kick off our carnival. For more information please visit Rare Disease Day.  

You might be wondering what a blog carnival is and what is all the fuss about. Well, join us February 29, 2012 to find out.  If you or someone you love has been affected by Chiari or any other rare disease this carnival is for you.  Each month we will discuss new suggestions for living well with a challenging disease. Come back and join us for the first Chiari Carnival! 


Welcome To Chiari Carnival, a community of bloggers who discuss the challenges of living with Arnold Chiari Malformation.  Here at Chiari Carnival, we want to broaden the understanding of Chiari and to support those affected by this rare condition. Our goal is to unite our community of bloggers for a specified topic of discussion once a month. If you are a blogger living with Chiari or supporting someone with Chiari please feel free to join us in our focused discussion of "My Rare Disease."  Please leave your email in a comment below or send an email to If you aren't a blogger then please join our Chiari Carnival by reading and commenting on the blogs participating in the monthly focused discussion.