Purple Day for Epilepsy

Wednesday, March 26 is the Global Day of Epilepsy Awareness (also known as “Purple Day” thanks to 15 year-old Cassidy Megan, founder of the Purple Day Organization). 

Purple Day 2012

Along with many other epilepsy education advocates, I will be wearing purple. A purple sweater, purple earrings, and a purple bracelet – heck, my nails are painted purple and I might even break out my purple shoes. 

Why am I wearing purple?  After all,

Wearing purple is not going to cure epilepsy. 

Wearing purple is not going to stop the increased seizures Robert is having.

Wearing purple is not going to increase funding for epilepsy research.

Why am I wearing purple?  I am wearing purple because:

My brother, Robert, is 1 of 3 million Americans who has epilepsy;

Robert’s seizures are not controlled but he is hardly the exception. A third of people with epilepsy have seizures which can’t be controlled with treatment and which can lead to brain damage and death;

Robert wants to spread awareness about epilepsy and I promised him I would help;

I want to dispel myths about epilepsy. To be clear: it is not contagious; it does not mean the person is possessed and a person cannot swallow their tongue during a seizure;

Epilepsy is not something to fear;

Robert has Complex Partial Seizures – one of 40 different kinds of seizures;

But mainly, I am wearing purple because:

Robert has had epilepsy his entire life. I remember him as an energetic, curly-topped boy who was notorious for getting lost in shopping malls. He struggled in school but managed to take a few community college courses once he graduated high school (a feat our mother wondered if he would ever accomplish).  Robert lived by himself and with a companion (she also had epilepsy) and they were able to care for each other for many years.

Now, Robert lives with me and my husband because he can no longer take care of himself. He needs help taking his medications, getting dressed and cleaning up in the bathroom.  Robert wears a helmet because his seizures make him fall, he uses a walker because his balance is awful and repeats questions because his memory is pretty terrible. 

I have seen Robert deteriorate through the years due to the uncontrolled seizures, the medications, the surgeries, the accidents and the falls. He has had mood swings due to the medications and can be stubborn and obstinate as heck. 

But mainly, Robert teaches me that it is okay to enjoy the simple things in life. He is happy watching Family Feud and doing his Word Search puzzles (usually simultaneously so multi-tasking obviously runs in the family). He enjoys Rocky Road ice cream more than anyone I have ever seen and would eat it after every meal if we let him.  He has found comfort in what seems to be a direct pipeline to God – he prays for everything and everyone. I do not have this kind of faith but I admire him for his conviction and his beliefs.

Our family never thought Robert would live a long life. We weren’t being morbid but knew that with his determination to be independent and his uncontrolled seizures there was a strong possibility he would die young. He almost did – he had a seizure in a swimming pool as a teenager and was saved only because our dad immediately jumped in after him. He was in a coma for a few days but he survived.

It was after this coma that he felt his purpose was to spread awareness and education about epilepsy. 

I am wearing purple today to celebrate Robert’s determination, his persistence and his purpose. 

Please don’t be afraid to ask me about epilepsy and don’t be afraid to talk about epilepsy. 

Help Robert spread epilepsy awareness – wear purple! 

(And if that means buying a new pair of purple shoes, you have my full support albeit tinged with a little bit of jealousy!)

Epilepsy Facts and Resources

In support of the first annual Talk About It Epilepsy weekend, I’d like to share as many epilepsy facts and resources as possible.  This information can also be found as a downloadable document on the right side of this post. 

Epilepsy affects one in 26 people in their lifetime so chances are this flyer will come in handy for either you or someone you love or know. 

What is epilepsy exactly? 

·         Epilepsy is a disorder; not a disease.  A seizure can be described as an electrical storm in the brain.  Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain.  A person is thought to have epilepsy when they have had at least two seizures.    Source: Multiple

·         Almost 3 million people living in the United States and 50 million worldwide live with epilepsy. Source:  Epilepsy Foundation

·         500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

·         Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

·         Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

·         It is a MYTH that a person can swallow their tongue during a seizure.   Nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  Source: Epilepsy Foundation

·         Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  Centers for Disease Control & Prevention

·         Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

·         One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

·         Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

·         In over 30% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

·         In almost 75% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Source: Epilepsy Foundation

·         Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com

EPILEPSY RESOURCES
 

The Epilepsy Foundation.   The Epilepsy Foundation is a great place to start in the search for information about epilepsy.  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 forResearch 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.

Purple DayOrganization.  Who doesn’t love purple?  According to their website, “Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy's idea which is now known as the Purple Day for epilepsy campaign.”

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. 

Let’s Talk About It!

Why I’m Wearing Purple on March 26

Breakfast of Champions!

March 26 is the Global Day of Epilepsy Awareness (otherwise known as “Purple Day” thanks to the Purple Day Organization ). 

Purple Day is about spreading awareness and education about epilepsy which, hopefully, leads to more research so this disorder can be cured. 

Yes, cured.  The goal is to stop epilepsy in its tracks.

On Monday, I won’t just be wearing purple but I will be sharing purple cupcakes (because what better way to get people’s attention than with chocolate?). 

Hey, you had me at “cupcakes!”

The Purple Day Organization further explains what Purple Day is about: “Purple Day was founded in 2008, by nine-year-old Cassidy . . . Cassidy's goal is for people with epilepsy everywhere to know they are not alone.”

To me, Purple Day is about my brother Robert.  Robert has waited very patiently his whole life to find a cure.  He’s had two brain surgeries, he’s tried most medications on the market and he has participated in a study for the Deep Brain Stimulator. 

He’s waited for a cure since he was five years old. 

The seizures continue but so does Robert.

Robert is willing to try anything to stop his seizures.

He prays every night that God will take his seizures away “completely.” 

He’s never lost his hope or his faith.

I want to do what I can so Robert (and the millions like him) can finally see a cure for epilepsy.  I will do what I can to make people aware of epilepsy and to educate people about epilepsy.

That’s why I’m wearing purple (and eating  . . . I mean, baking . . . so many cupcakes). 

A few facts about epilepsy (for more, please read the epilepsy awareness month series). 

1.  Robert is one of almost 3 million people living in the United States and 50 million worldwide with epilepsy.

2.  Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.

3.  Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!)

4.  It is a MYTH that a person can swallow their tongue during a seizure.    Also, nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head. 

5.  According to the CDC, “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.” 

Please join me in wearing purple, grab a purple cupcake and help me spread awareness about epilepsy.  Thank you!

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)!