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.


  1. I appreciate you all sharing this. Hubby has chiari and it's taken weeks to find a variety of information. Today, oddly, I received the first "Well, be glad it's not cancer" comment as I tried to explain his condition.

    1. At one time I found myself envious of cancer patients. Typically, cancer has life cycle; it either goes into remission or, unfortunately, ends in death. I knew I needed some clarity when I found myself 'envious' of cancer patients.

  2. I have read and followed every possible in the carnival. Thank you for allowing me to be part of spreading the word about ACM!

    1. Thanks for being part of it. It's important to be proactive patients and do what we can to use our voice!

  3. Someone suggested we add the American Syringomyelia & Chiari Alliance Project ( site to the links on the right. Thought I'd pass it along:)

  4. Any chance you could add the brain and spine foundation to your links on the top of the page. I think I am the only UK person blogging on the carnival but it would be grand to have a UK link x

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