Ok, so I have epilepsy. Now what?

So, let me start by giving a couple disclaimers.

First, there are countless kinds of epilepsy. The type that I have (partial-focial)  is probably one easiest to live with–in that I can still drive, it is easily controlled with medication and I have a very ‘normal’ quality of life. Second, adult-onset epilepsy isn’t like most adult onset diseases–it isn’t as if you just develop it one day, or it’s the result other lifestyle choices. In most cases, people who have epilepsy, have had it for the duration of their life, and a large enough section of their brain hasn’t been effected until their first seizure presents itself.

For me, there were countless warning signs. I was very clumsy–having what my family calls ‘dropsy’, where I would be holding something and unexpectedly drop it. Or, the times when I thought I just hadn’t eaten well and felt dizzy from having low blood sugar (these were probably mild seizures).

My entire goal in writing my journey to a diagnosis is two-fold: to educate people on what epilepsy can look like in daily life, and to encourage those with severe epilepsy or undiagnosed epilepsy to persevere.

In the five years since my diagnosis I  have been seizure free. I have a beautiful and healthy 4-1/2 year old daughter and a normal life that happens to include epilepsy.

For those seeking a diagnosis or those looking to help a friend or family member, I encourage persist until you find a doctor that is an expert in your field. Be your own biggest advocate. Don’t allow a diagnosis that doesn’t feel right to keep you a cycle of sickness, but instead continue to ask questions and find people who will listen.

But most of all, we need to educate ourselves. Epilepsy–like many neurological disorders–bears a stigma because people do not understand what daily life looks like for a well-controlled epileptic.

For example, did you know:

Epilepsy affects over 3 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.

In America, Epilepsy is as common as Breast Cancer, and takes as many lives.

Almost 500 new cases of Epilepsy are diagnosed every day in the United States.

These facts are staggering. As each one of us becomes more educated, we become less fearful. I’m grateful to say that while epilepsy is a part of me, it does not define me.

 

 

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