Today is a beautiful Fall day here in Nashville. As, the leaves are beginning to change and my windows are open so that I can feel the beautiful Fall winds start to blow. I am pondering what will change for epilepsy just as the season is changing. As I sit here and think about how many people are suffering from seizures each day it almost becomes a bit overwhelming. I dread going on Facebook because I know I will see another post about Haley or Calvin having another seizure as their parents watch helplessly and wonder will their child survive this seizure. Their parents’ hearts are aching… Then the heartache turns into anger and then into a force to be reckoned with. These mothers, like so many others out there are searching for seizure freedom for their children as well as a HEALTHY life for their children. I listen to them as they tell their story of living with a child with epilepsy. Yet, people don’t always listen. People often tell them what they think or tell these mothers about epilepsy like they have no clue about the topic. I often have the same thing happen to me when someone tells me something about Samuel’s autism. My blood boils and I think, “REALLY, I live with this 24/7! I know about his autism! I am NOT an idiot!” I can only imagine how these parents feel when someone tells them about their child’s epilepsy like they have no clue about epilepsy. These parents live with this 24/7 and are fighting to find ways to help their children.
Also, my heart grows heavy as I think of how many women with epilepsy cannot afford seizure medication. Or the question of “Will someone want to marry me even though I have epilepsy?” What about the women with epilepsy trying to have children? They are searching for answers to these questions as well:
Which seizure medicine should I take?
Which vitamin should I take?
Do I have to have a c-section?
Can I breastfeed my child?
Will my child develop epilepsy?
How will I care for my baby if I have a seizure?
Will I die from epilepsy?
These are just a few of the thoughts that enter the minds of women with epilepsy. Yet, we do not have epilepsy centers to help women with epilepsy. Women with epilepsy are left to try to find out the answers to these questions and so many others that were not listed. Parents of children with epilepsy are left to find out the answers to their questions as well. Where are the Epilepsy Centers? We have centers for so many other things but not epilepsy. With numbers like 1 in 26 people with develop epilepsy we should have epilepsy centers EVERYWHERE here and abroad. Will you help us make a change? Will you stand up with us and say, “Where are the Epilepsy Centers? Where are the Women With Epilepsy Clinics?” It is time to make a change and I look forward to working with each of you in 6 months, a year, 6 years, 16 years, 26 years and beyond to change things for women and children diagnosed with epilepsy.
