Thursday, March 22, 2012

Epilepsy Resources

Monday, March 26 is Epilepsy Awareness Day.  It’s also an excuse to wear purple!

According to the Purple Day Organization, “Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2012, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!”

Perhaps in purple snowsuits? 

So how did “purple day” start? According to their website, “Purple Day was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, with the help of the Epilepsy Association of Nova Scotia (EANS). Cassidy chose the colour purple after the international colour for epilepsy, lavender. The lavender flower is also often associated with solitude, which is representative of the feelings of isolation many people affected by epilepsy and seizure disorders often feel.”

Sometimes it’s hard to figure out where to turn, especially if a person was just diagnosed.  It can be overwhelming and confusing trying to process so much information after a diagnosis of epilepsy. The feeling of isolation by those living with epilepsy and their caregivers is very real but we are now fortunate to have many resources available.   

I really don’t know how my parents were able to get through the diagnosis of Robert 40+ years ago.  There weren’t online support groups or websites to visit for more information (heck, there wasn’t anything “online” 40 years ago!). We were still getting up to change the television channel (thankfully, that’s what little brothers were for) and the founder of Facebook wasn’t even born yet (oh goodness, now I’m getting depressed!).

Thankfully, today there are plenty of accessible resources.  To help with the mission of Purple Day, I’d like to share just a few of the many resources and support groups who can help when living with epilepsy or caring for someone with epilepsy. 

The Epilepsy Foundation.  The Epilepsy Foundation is a great place to start.  Their website includes information about epilepsy, seizures, research and much more.  The Epilepsy Foundation website has support communities for both those living with epilepsy and those caring for someone with epilepsy as well as information for educators and advocates. 

Epilepsy Therapy Project.  Another excellent resource.  Their mission is “to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment.”  They have information on innovative treatments and research as well as an online support group. 

Talk About It Organization.  Greg Grunberg (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy.  In an introduction on the website, Greg proudly calls his son his hero.  This terrific website has many people you will likely recognize talking about epilepsy and different aspects of it, including first aid for seizures, employment, how to discuss epilepsy in your family as well as important information about epilepsy medication.  

CURE: Citizens United for Research in Epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the CURE Epilepsy organization because their daughter has epilepsy.  This organization does a fantastic job spreading awareness and education and raising money for epilepsy research. 

National Association of Epilepsy Centers.  If researching treatment centers or epilepsy specialists, the National Association of Epilepsy Centers can help with the search.    

PAWS With a Cause.   I can’t leave out my “pet” organization!  PAWS With a Cause  provides Service Dogs trained to deal with seizures as well as other medical conditions. I can't stress enough how these dogs make such supportive and comforting companions. 

Many of these organizations also have their own Facebook pages providing additional information and most can also be found on Twitter.  Both provide wonderful opportunities to connect with others in a similar situation. These real connections will help combat that pesky troublemaker, isolation. 

I’d love to also connect on Twitter (@robertssister1) or through the Robert’s Sister Facebook page .   Please feel free to share more epilepsy resources in the comment section and help spread Epilepsy Awareness and Education (and don’t forget to wear purple on Monday)!

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