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Epilepsy Blog Relay™:Brandy and My Epilepsy Story

3G5B0147This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31, 2016. Follow along!

Brandy’s Story

1 in 26 people will be diagnosed with epilepsy in their lifetime and half of these will be females.  Women are made differently and we face different challenges.  We need to talk about the different challenges that they face.  Whether it is seizures around their menstrual cycles, infertility, pregnancy, breastfeeding, menopause, bone density, and sexual health.  In the epilepsy community we have not focused on these issues adequately to help women living with epilepsy.  Lets be honest, some people don’t want to talk about these issues because they are difficult topics to discuss at times.  However, by not addressing these topics, women with epilepsy will not lead full lives.

Women deserve to have Women’s Health Issues related to epilepsy addressed head on!  We don’t need to address these issues as a side topic but we need to look at the ‘Whole Woman”.  When choosing doctors you need to find ones that are willing to become YOUR partner in your healthcare.  All of your doctors need to be able and willing to communicate with each other so you have the best care possible.  In addition, if you are planning to have children search for a pediatrician that will work with your doctors to make sure your children have not been impacted by your anti-seizure medication.  If your child has been impacted than they need to seek help for your child very early for intervention.  In the end, it is the patient that is responsible for choosing a doctor that they can engage with and TRUST.  Trust is so important as you navigate through your epilepsy journey.

In 2013, I founded My Epilepsy Story after I faced my own challenges of living with epilepsy.  At My Epilepsy Story, we focus on women and girls living with epilepsy.  We are ‘Bridging the Gap’ for women and girls living in every corner of the world.  We Advocate, Research, and Educate the world about the unique needs that we have.  Every woman and girl living with epilepsy has her own ‘My Epilepsy Story’.  Each story is part a beautiful Mosaic.  We recently produced a video called Mosaic to share my personal ‘My Epilepsy Story’ and I would encourage you to watch and share it with others.

I was fortunate to find doctors to partner with me in my own healthcare, but that was later in life.  I want to make sure every woman and girl living with epilepsy doesn’t have to wait to later in life like I did.  I want these women and girls to have a community that I didn’t have when I was diagnosed with epilepsy.  In life we face challenges, it is what you do in those challenging moments that will define our lives.  Please visit our website www.MyEpilepsyStory.org to read more about our organization, my story and the stories of so many others. TOGETHER WE CAN change the lives of these women and girls!

NEXT UP: Be sure to check out the Megan’s post tomorrow, which can be found at In Megan’s Shoes. For the full schedule of bloggers visit the March Participants gallery.

There’s still a bit of time left to participate in the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness.

And don’t miss your chance to connect with bloggers during our Twitter Chat using the hashtag #LivingWellChat on March 31 at 7PM ET.

3G5B0116Brandy Parker-McFadden is Founder of My Epilepsy Story. Her 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 her own personal epilepsy story.

  1. Lainie
    | Reply

    Great and refreshing angle you’ve taken with Epilepsy awareness. I chose not to have children for this reason and many others related to Epilepsy and I have accepted that now but it’s great to see you supporting the issues around this. I also had a form of catamennial Epilepsy and could rely on a big grand mal the day before my seizure every month. Wasn’t discussed 25 years ago when I was diagnosed. Good on you!

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