Here is a disease that is not often heard of. If it hadn’t been for a young cousin of mine that was diagnosed with it then this would be the first time I would be hearing of this condition. Support groups are so important, especially if the subject is of a rare nature.
Here today to tell us more about this rare disease is the creator of the Facebook support group, Chiari Malformation Support Group.
Please welcome Ashley Casey
My name is Ashley Casey and I’m a wife, mother, sister, daughter, and friend. I’m also the face of invisible illness. With many diagnosis under my belt I am a prime example of just how different a person’s exterior can be compared to their interior. I had been a vibrant and healthy 21 year old when suddenly one day over 6 years ago I woke up and my life was changed forever. It was December 7th and I woke up with the worst headache of my life, numbness had spread across the right side of my face, my right eye dropping, and severe pain in my right eye, right ear, and neck. I immediately knew something was very wrong. I sought medical care immediately and within a couple of weeks I was diagnosed with a condition called Chiari Malformation. A quick diagnosis with Chiari unfortunately is very uncommon-many spend years, if not decades fighting for their diagnosis. I was incredibly lucky.
Chiari (pronounced-key-ar-ee) is a condition in which the back of your head is misshaped and/or the opening of the skull is too small. This in turn causes the brain to herniate out of the skull and into the spinal column. Often we are born with this condition but there are cases of acquired Chiari-caused by car accidents, cerebral spinal fluid leaks, bad falls etc. This condition causes well over 100 known symptoms, the most common of which is a very specific headache brought on or made worse by any form of straining (coughing, laughing, bending over, lifting heavy objects, etc). It also has many “sister conditions” that really add to the vast and varying symptoms many Chiarians face. Like most people I had never heard of this condition. This also adds to the difficulty of a proper diagnosis for many patients. As with many uncommon health issues, most do not know of them until they become a part of your life either by your own diagnosis or the diagnosis of a loved one.
Chiari has no cure but surgical intervention is the only recognized treatment (outside of symptom management). The surgery most often performed is called a “posterior fossa decompression surgery”. Each neurosurgeon has their own way of performing this surgery. For me personally this entailed removal of a piece of skull at the base of the skull itself, removal of part of the C1 vertebrae, opening of the dura (membrane of the brain), and a patch used to hold the brain back into its proper place.
When I was first diagnosed I was petrified. I felt completely helpless as more and more symptoms began to occur and my fear became overwhelming. So I scoured the internet for answers. I began to research everything I could get my hands on. I educated myself and in gaining knowledge of my condition I began to feel as though it took some of that fear away. I began to feel as though I regained some control in a situation where I was powerless over what was occurring within my body.
Over the next 5 years I tried to control symptoms as best I could, I dealt with many new diagnoses, and I tried everything I could to avoid surgery. The idea of surgery was terrifying but eventually I became so sick that the idea of not having surgery was even more terrifying. After those 5 years of misery I eventually found out the herniation of my brain out of my skull had doubled in size in a very short amount of time. This was the deciding factor for me, I knew I had to have surgery or face the consequences.
What inspired you to create this group?
As all of this occurred I became active in Facebook groups devoted to Chiari. The amount of information other patients could provide was astounding! But I found that there was a very big need to create a group that could be a safe haven, one in which love and support was the foundation. So that is what I tried to create.
Please tell the readers a little about the group.
When our group began it was only a few people, those who saw the same need as I did. I also found that in creating this group and reaching out to others that it helped me immensely in my own journey as I faced my upcoming surgery. Often the words I wrote to help someone else were often things I needed to hear myself. Our group became my Chiari family. The love, kindness, and support I received was humbling. The friendships I made are irreplaceable. It gave me the strength I desperately needed during one of the hardest periods of my entire life.
Our group has been absolutely amazing to watch grow. We are over 700 members strong and continuing to grow each day. I’ve seen newcomers join and desperately seek answers and then I watch as they go from asking questions to answering them. Getting to see a member come to the group, just as I did, scared and completely overwhelmed, watching them walk through a brutal surgery, and then getting to see them in turn help others is amazing to see.
What would you like this group to accomplish?
My biggest hope for this group is that it remains a safe place for those affected by Chiari to come-both those who have it themselves and those who are loved ones of those who have it. For those who actually have Chiari – I hope this is a place to come and learn, to find friendships, to realize they are not alone, and to find resources for proper care. For parents or loved ones of Chiari sufferers I hope they find comfort in finding other care takers for those with Chiari, resources, and support. Above all I hope this group continues to grow, that members continue to help each other, and that as a community we are able to continue to raise awareness and hopefully through that awareness we will be able to find a true cure to a truly awful condition.
I thank you on behalf of all of our members for helping to shine a light on an often unknown and misunderstood condition. Awareness is key-as with any health condition. Our voices alone may be but a whisper but together our voice is STRONG and our message can be HEARD. Be well!
Thank you Ashley for taking the time to educate us on this rare disease.
Click on the link to find this Facebook group – Chiari Malformation Support Group.
*This blog post is part of the Blogging From A-to-Z Challenge (April 2017)
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