Tuesday, February 28, 2012

Rare Disease Day!

Welcome to the first Chiari Carnival celebrating Rare Disease Day.

Hey, I’m Alicia. I blog to share my experiences in order to help others and spread awareness on Chiari Malformation and Syringomyelia. I also have a facebook page based on my blog sharing information as well. MyChiariLife. I am involved with an online support group for Chiarians: Chiarisupport
I have my Associates Degree in Business Management and I am currently the Asst. Guest Service Manager at a hotel in PA.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?

I was 15 years old when I was diagnosed with Chiari Malformation and Syringomyelia. I was diagnosed in 2003.

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?

Syringomyelia and depression.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery?

Yes, I had decompression surgery in 2003, about 3 months after diagnosis. I haven’t had any other surgeries.

Western medicine focuses on medicine and medical procedures. However, many people benefit from ‘alternative’ therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief?

Ice packs. Freezing the pain. Ice packs are my best friends. One on the base of my head/neck and the other on the forehead.

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?

Depth perception is way off. I could be walking through a doorway and somehow end up walking into the door frame instead. Although I know I’m seeing myself walking though the doorway…BANG I’m walking into the frame. ALL the time.

Twisted/slurred speech happens a lot. When I get excited or I’m talking fast it happens most. I trip over my words or repeat them over and over until I can make myself stop and start over again.

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don’t understand. What would you like others to know about living with Chiari?

The only thing you can do is “Keep Moving Forward” to quote Walt Disney. You have basically 2 choices…let the disorders overtake you or you can overtake the disorders. If you want to live your life…unfortunately you have to get up and get going on your bad days as well as your good days. It’s a pain…literally but the alternative isn’t much of a life to me.

Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude?

Reading. I’m a book nerd. Harry Potter is my love. Disney. Music. Movies. I’m crafty. Paper-crafting, woodburning, and other artsy fartsy stuff. Act goofy. Hang out with my boyfriend. Joe is my support, he takes me seriously when I'm hurting and helps me make the best of it. Time with my family and my friends.

A great quote can remind us to keep the faith during those dark moments in life. Can you share a quote or saying that provides you with inspiration?

I love Disney so here are some:The very things that hold you down are going to lift you up. –Timothy
Mouse (Dumbo)
Be yourself here, and if people aren't taking you seriously, then they need to change, not you. –McQueen
You're braver than you believe, stronger than you seem, and smarter than you think. –Christopher Robin

On behalf of ChiariCarnival thank you so much for sharing some of your Chiari journey with us.
Sure thing:)

If you're interested in joining our carnival let us know! Click the link above.


  1. Thanks for sharing your story. I appreciate all the posts in this carnival.

  2. I <3 my friend Alicia and how awesome she is, even though she is a nerd

  3. Thanks for reading!!

    @Dixie...best comment ever:p

  4. I'm with ya'll on the ice packs!!! I have an old fashioned ice pack that you fill with ice just for traveling! Couldn't live without it!

  5. Ice packs all the way:) I have two of them but I'd really love to have an excess so I can rotate them lol