Tuesday, March 26, 2013

Purple Day 2013

Today was "Purple Day."
This is the day that we not only raise awareness for those living with or affected by epilepsy but we also celebrate the victories that we have gained within the knowledge that we now have!

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.

Mabel was diagnosed with epilepsy at 6 months of age, although she started having her first seizures around 2 weeks old.  We knew at this point that her seizures were just one more symptom in a bigger mystery but the diagnosis helped us get on the right track to controlling the 'fireworks' in her brain.
During Mabel's first EEG there was abnormal activity in the back portion of her brain.  During her second EEG her seizures had increased in that she was now seizing almost 80% of the time, both awake and asleep.  

Mabel has several different types of seizures.  Her body produces jerking movements, or myoclonic seizures (mostly due to her disease, we now know).  She has absence seizures (where she sometimes looks off in one direction for a long period of time and we can't get her to come out of it), and she also has had atonic seizures (drop seizures as we call them where her head will randomly drop).  She has had several other types over the past 2 years but it would be hard to describe them all.

*Seizures are symptoms of abnormal brain activity. 
 *1 in 10 Americans will have a seizure at some point during their lifetime.  
*In about 7 out of 10 people with epilepsy, no cause can be found.
*Some causes can be:  head injuries, brain tumors, genetic conditions, lead poisoning, problems in brain development before birth, and infections like meningitis.  
*Epilepsy is often thought as a condition of childhood but it can present at any time.
Mabel's seizures were thought to have had an impact on her development before we got her official diagnosis of Batten Disease.  Seizures are still Mabel's main symptom.  She takes several different medications to try and control the seizure activity and we are constantly noting new neurological changes.  

Today we are proud to show our support of those affected by epilepsy.  
Watching someone that you love experience a seizure, let alone hundreds, is a very scary thing.  Sadly we have grown used to seeing them and it has become our 'normal.'  However, we understand the fear and anxiety that is a constant presence when living with epilepsy.  We are so grateful to be part of a wonderful community that is raising awareness and doing research to always better the treatments for these neurological conditions.  

Thank you to every one of you who wore purple today to support our girl and the thousands of others living with epilepsy.  We are grateful for you as always!!!

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