Do You Know Someone Living with Seizures?

I have made peace with Heterotopia, a rare seizure disorder invading my brain at conception. Specifically Bi-Lateral Periventricular Nodular Heterotopia, this disorder affects most of the gray matter in my brain. Benign tumors (nodules) migrate and attach inside my brain to cause a number of effects, seizures being the most severe.

I keep humor in this serious diagnosis by considering BPNH as the rocks in my head disorder. The "rocks" are the small clusters of brain cells, nodules. These nodules for the most part are stationary and permanent. Looking back, BPNH is the answer to most of my childhood difficulties. Although born with BPNH, I showed the first symptom at 18 years of age and the BPNH quickly progressed to over 100 seizures a month and leveled out at a current 18 seizures a month.

BPNH primarily affects females, however there have been few male survivors. Research states a majority of males inheriting this abnormality will self abort or be born with severe retardation. The outlook is unclear due to the fact the medical profession is still learning about BPNH. My seizures, a major side effect of the BPNH, have decreased due to proper medications and stress management but are still high in number and unpredictable in nature.

Although I live a life of Peace and Success, my body has many restrictions; no working in public, no driving, and no living independently.

My hope for the future is simple, to live seizure free in remission and to have raised awareness and funds for research, support, and assistance for individuals living with seizure disorders. I plan to raise awareness through a charity recently founded, The national Seizure Disorders Foundation, inspired by my personal experience and the heart breaking experiences of others.

Daily life can be a challenge for any individual dealing with seizure disorders. Whether medical professional, patient, family member, or caretaker we all need hope. As founder of the National Seizure Disorders Foundation and fellow patient I dedicate myself to raising awareness for seizure disorders such as Heterotopia and Epilepsy, raising funds for research into Heterotopia and it's effects, and raising a sense of hope for all that need to see a brighter and more peaceful future. Visit The National Seizure Disorders Foundation today. Leave a comment if you are in need of support or if you have the ability to help. Donations of any amount are appreciated.

Meet Anastacia Hanna, she's featured in our Hall of Heroes photo album. What's so special about Ana? Read on..

It was Spring 2009. Four year old Ana and her mom,Jesyka, were home alone. Jesyka lives with seizures from a rare genetic brain abnormality, Heterotopia. During the evening Ana noticed her mommy acting weird. She had seen plenty of seizures and knew the signs. She helped her mommy to a comfortable position and knew what to do when she saw her mommy seizing Gran Mal(Tonic Clonic).

Without a tear or panic, Ana picked up the phone and dialed 911 emergency. She explained to the EMS worker on the phone she was alone and her mommy was in seizure. She went on to say her mommy has a seizure condition and had taken her medications as she was supposed to. Ana stayed on the phone while EMS workers were on their way. All the time Ana sat by Jesyka stroking her face and her arm letting her mommy know all would be okay.

The workers arrived and Ana told them what was happening and where they could find her moms medicines. Ana was safe and remained cool under pressure. Ana's dad arrived soon and directed EMS to take Jesyka to the hospital.

All was soon well and Ana was awarded a Heroes award, a special gift from her grandparents. In November 2009, she will be awarded a Heroes award by the National Seizure Disorders Foundation.

She will forever be our littlest hero.

Tonya Heathco

PS: This true story points to the fact to make everyone around you aware of your seizure condition because you never know who is going to be your hero. It's part of being responsible for your own health.

Epilepsy is a common chronic neurological disorder characterized by recurrent unprovoked seizures. My education into the complexity of seizure disorders continues as I discover the majority of individuals not experiencing living with seizures have one word for seizure disorders, "Epilepsy". Too many disorders to list here, we'll keep it simple by stating that all seizure disorders are not made equal. Epilepsy is often the label less educated doctors will give to a seizure disorder. I've witnessed Epilepsy being among the most controllable seizure disorders. As you encounter one living with seizures, consider what has been said and keep an open mind and relate to the individual "label free". Speaking from experience, I am one living with seizures wanting to live free of the one general label of Epilepsy.

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