Black History Month: Epilepsy in the African American Community

According to the Epilepsy Foundation, 12 percent or more than 350,000 of the over 3 million Americans with epilepsy are African-American. African-Americans are also more likely to be diagnosed with epilepsy than Caucasians; they more often experience status epilepticus; and they are at an increased risk for Sudden Unexpected Death from Epilepsy (SUDEP).
Join me on the New Digg
Web resource just for you
In response to these dramatic statistics, the Epilepsy Foundation has created a new site called Epilepsy and the African American community. The site features real personal stories, resources and is packed with information on epilepsy.

Hear from Jason Snelling
Jason Snelling, FB for the Atlanta Falcons, has recently done a public service announcement for the epilepsy foundation. You can check it out below:

Read more
For more information you can also read the award winning article by Aliyah Baruchin on epilepsy in the African American community. The piece was published in EpilepsyUSA the Epilepsy Foundation’s flagship publication.

Tell us your story
Feel free to comment below on your own experience.

Every two minutes: A new case of epilepsy is diagnosed

The Epilepsy Foundation shows on their site that there are 200,000 cases of epilepsy diagnosed each year (it appears they are referring to the US only). To put this number into perspective, it occured to me that this really amounts to a new case diagnosed every two minutes.

Other Two Minute Facts
Every two minutes …
a woman is sexually assaulted
a woman dies of cervical cancer
a woman is diagnosed with breast cancer

So set your watch
Every two minutes, a person is diagnosed with epilepsy.

More Numbers
Check out our Epilepsy by the Numbers.

I’d love to hear your thoughts on this. Feel free to comment below.

This Month in Review: One tweet can change the world

Would you believe that one tweet can change the world? I’ve recently discovered the Shorty Awards on twitter. With your help, I could win a Shorty in #health. I hope to use it as a vehicle to raise even more awareness for epilepsy awareness.
All you need you do is to tweet the following:
“I nominate @jessicaksmith for a Shorty Award in #health because of the impact she has had on epilepsy awareness through Twitter.”
All tweets will be recognized and reciprocated! 
I recently reached out to Stuart Ross McCallum, author of Beyond My Control, the poignant story of the author’s life with epilepsy and his fight to create a normal life for himself and his family. Read on for a sneak peek at this moving story. More
Each year the American Academy of Neurology hosts the Neuro Film Festival as a way to shine a spotlight on the fact that one in six Americans are affected by a brain disorder such as epilepsy, Alzheimer’s disease, migraine, autism, MS, Parkinson’s disease, ALS, stroke, and more. More

After a months of hard work, the Joey’s Song album is ready, and will be released later this month. Kevin Baird and Michael Gomoll of the Joseph Gomoll Foundation would like to express their thanks to all those who helped the Foundation reach their Kickstarter goal. You helped them raise $7,620 for Joey’s Song. That money will help cover the manufacturing costs which means, every single cent raised selling the Joey’s Song albums can go directly to the Epilepsy Foundation. More
Rather than a generic list of resolutions, I’d like to begin 2011 featuring your epilepsy New Year’s Resolutions. I sent a request out via twitter to send me resolutions.
Mike in Mississauga, Ontario, Canada said:
“My main resolution is to raise more awareness. Subsequently I plan to hold a 10k plus fundraiser for Epilepsy Halton Peel and research.” More
What did you think of these stories? Let us know by leaving a comment below.
Next up: In honor of African American History Month throughout February, many of our stories shine a spotlight on this community. For more information right now visit: Epilepsy and the African American community.

Stuart Ross McCallum shares his story in Beyond My Control

I recently reached out to Stuart Ross McCallum, author of Beyond My Control, the poignant story of the author’s life with epilepsy and his fight to create a normal life for himself and his family. I had hoped to include his New Year’s Resolution, in an earlier post.
Dedicated to a solution
However my conversation with Stuart opened the door to a much broader question of increasing epilepsy awareness when he let me know that his resolution hasn’t changed for the past few years. 
Stuart’s resolution for 2011 is to continue to enlighten people about epilepsy. He belives (as do I) that with each new person educated, the misunderstandings of the condition which has been shrouded by myths will slowly disperse. Making the world a better place for all living with the (much stigmatized) condition we all know as epilepsy.
Opportunity presented
Instead, I saw our conversation as an opportunity to shine a spotlight on Stuart’s book, Beyond My Control. Stuart has generously agreed to share a section of his prologue with us here at Living Well With Epilepsy.

At last! The morning of the 23rd of October 2003 finally arrived. It was a bleak, cold and chilly day and my first brain operation was scheduled to be performed at 8:00am. After a forty five minute drive, my wife Lisa and I arrived at the AustinHospital in Melbourne, Australia. I had been very jittery throughout the journey, talking continuously about anything and everything. We were both exceedingly anxious with the events that were about to take place. Our hands sweaty and clasped tightly together, we nervously followed the signs to the neurology department for my first surgical procedure. As with all hospital admissions there was an abundance of necessary formalities to undergo. Once completed, I soon found myself wearing the unfashionable, ever popular standard hospital attire. With only moments to say goodbye, I was whisked away to the operating theatre.

During the past twenty years epilepsy caused a significant, often frightful, impact on my life and the lives of everyone close to me. For fifteen turbulent years, I operated my own business, managing staff with ever increasing seizure frequency. This created an unstable and at times, highly dangerous working environment. The magnitude of my condition escalated, resulting with a post seizure response of a menacing and sinister nature, prone to violent outbreaks. Whenever a frightening situation occurred not only was I in danger, my staff, and often customers were as well. Individuals perception and understanding of epilepsy clearly showed, which had surprising results. My socially unacceptable behavior ultimately influenced me to undergo two major brain operations, in the hope of gaining seizure freedom.

Enduring the postoperative healing process was unlike anything I had ever experienced, absolutely unimaginable. My surgery involved having a golf ball sized part of my brain being resected, in contrast to removing something off the brain itself; a form of rewiring took place. This sent my mind into a tailspin defying any sense of logic and reason.

More information
For more information visit

Your Thoughts
I’d love to hear your thoughts on Stuart’s experience and on the broader issue of increasing epilepsy awareness. What are some ways you have made headway in increasing awareness?

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