My Epilepsy Story

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info@myepilepsystory.org

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(615) 822-4224

Founder's Story

How My Epilepsy Story Was Formed​

My childhood was healthy, until I had my first tonic-clonic seizure at the age of 15. Luckily, I am fortunate to have only had three seizures since being diagnosed. At the time, I thought that I was an informed patient about epilepsy. I had responded to treatment with medication, and epilepsy didn’t affect my life, except for minor side effects through the years.

Everything changed more than 12 years ago, when I gave birth to my first child. Epilepsy began affecting my life on a daily basis, and I realized how uninformed I had been about epilepsy. Research now shows that the anti-seizure medication I was prescribed, while pregnant with my first child, can cause developmental delays, characterized by low verbal IQ in children when exposed in utero. I was successful in that my seizures responded positively to epilepsy treatment, but I was not prepared for how my epilepsy would impact my son’s life. At 8 years old, my son, Samuel, was diagnosed with Autism Spectrum Disorder. He spent countless hours in occupational, physical, and language therapy. I grapple daily, with the feelings of how the anti-seizure medication I took to control my seizures while pregnant, has changed my son’s life.

Although I am in the group of people with epilepsy that is responding to treatment, I realize the importance of cutting-edge epilepsy research. Epilepsy research falls far behind that for other neurological diseases. My hope is a cure for epilepsy. Until that time, the more data-driven research we have, the better our chances of having more effective epilepsy treatments and fewer side effects from anti-seizure medications. I also realize that even though I am in the group that is responding to medication, at any point I can move to the group that is not responding to anti-seizure medication.

My reason for starting My Epilepsy Story in 2013 was to focus on women and girls with epilepsy as well as the children that are impacted by their mother’s epilepsy. Women and girls are the most vulnerable members of society. When a woman or girl is diagnosed with epilepsy, their vulnerability increases. I believe you cannot focus on women with epilepsy, without following their children and other girls that have been diagnosed with epilepsy. When researching epilepsy advocacy organizations, I did not find any that focused on these two groups together. This compelled me to step up to fill the void.

My passion is to advocate for cutting-edge epilepsy research, educate doctors about the patient perspective, educate patients about their epilepsy, and to raise funds to do this, while sharing my personal story.  I have an interest in women’s health issues, specifically related to women living with epilepsy. As a woman living with epilepsy, I can testify that epilepsy not only impacts the woman but her entire family as well. Women and girls’ health issues related to epilepsy need to be addressed globally. In addition, I have an interest in the FULL IMPACT that anti-seizure medications have on ALL people living with epilepsy.  Please join with me to help Bridge the Gap for women and girls diagnosed with epilepsy.  Together We Can!  

Brandy McFadden and Family - My Epilepsy Story

About Brandy McFadden

Advocate Role:

Member of:

“Every picture tells a story, and every patient has a story to tell.”

Brandy McFadden

EMPOWERING Women and Girls Living with Epilepsy

Our Mission

My Epilepsy Story (MES) is an international, non-profit organization that serves to bridge the gap for women and girls diagnosed with epilepsy, as well as the children impacted by their mother’s epilepsy by Collaborating, Advocating, Researching, and Educating (C.A.R.E.) about women’s health and epilepsy. Our organization is also unique in the aspect that MES does not accept ANY pharmaceutical funding. MES is dedicated to serving these females, their families, and the medical professionals that selflessly care for them.

VISION

My Epilepsy Story's vision is to bridge the gap for WOMEN and GIRLS living with epilepsy, Nationally and Internationally.

PuRpose

To Collaborate, Advocate, Research and Educate (C.A.R.E.) people around the world about Epilepsy and its affects on women, girls and families who live with it.

We want to hear from you!

We’re an open door, as a resource for women and girls diagnosed epilepsy.

Message Us

We want to hear from you! We’re an open door, as a resource for women and girls diagnosed epilepsy.
Call Us (615) 822-4224

We are an International, non-profit organization that serves to bridge the gap for women and girls diagnosed with epilepsy.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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We are an International, non-profit organization that serves to bridge the gap for women and girls diagnosed with epilepsy.

Stay Updated

Receive valuable content and personal stories from other women and girls just like yourself.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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