We all witnessed something truly amazing in these past few months, through the power of social media the little known neurological disorder Amyotrophic lateral sclerosis, better known as ALS.
With over 113 million dollars raised and ALS now a household name, I can only imagine the possible research that will go towards such a debilitating disease. Now I want to bring another little known disease to your attention that is close to my heart and especially my brain.
Arnold Chiari Malformation is a rare serious neurological disorder that affects the cerebellum. You probably have never heard of it and quite honestly your doctor probably hasn’t either.
Chiari Malformation affects roughly 1 in 1000 people and can range in severity. The malformation is caused when the cerebral tonsils descend into the spinal canal and try to escape the skull essentially.
Some people can live without ever knowing they have it while the rare few have to go through medical treatment.
I am a part of the latter half.
What I thought was simply allergies turned into loss of balance, loss of some motor function, and even I even developed some trouble swallowing.
The main problem with Chiari is trying to find a doctor who actually knows what it is. In fact, it is not even taught in traditional medical school even with its current rise is diagnosis.
After countless misdiagnosis and puzzled doctors I was finally diagnosed my senior year of high school when I was 17. Now, three years later, I have been through three brain surgeries, hours of rehab and enough pain pills to make Charlie Sheen blush.
Even though my day-to-day life has changed, I do consider myself very lucky. My doctor was shocked at the fact that I wasn’t wheelchair bound due to the severity of my malformation. Aside from some horror film scars you really can’t tell that I am survivor of Chiari which makes it difficult to talk about.
But the tides are turning.
Recently Governor Rick Perry passed a bill where Texas recognizes September as Chiari Awareness Month, which is a small victory, but one that can lead to much bigger things.
There are nationwide walks going on Saturday, Sept. 20, so knowledge of this disease is spreading, but there is still much to do for Chiari to be as well known as it needs to be.
So think to yourself, a mere four months you probably had no idea what ALS was and now thanks to a few ice cubes and some water almost the entire country knows about it now. So spread the word, get the message out there and you could end up changing some lives!