Epilepsy Awareness Month 2015: A Sea of Advocacy

Our recent trip to the Epilepsy Awareness Day at Disneyland brought us face to face with many wonderful and inspiring advocates – all full of life, laughter, education and a passion for managing and curing epilepsy!

Epilepsy Awareness Day at Disneyland not only is a way for families affected by epilepsy to connect with others while being at the Happiest Place on Earth, it is also an educational opportunity.  EADDL was started three years ago by Brad Levy and his wife, Candy, along with the enthusiastic support of pediatric neurologist, Dr. Diane Stein. These three are tireless advocates not just for great epilepsy care but for a cure for epilepsy.

Dr. Diane Stein and Robert

While I did not have an opportunity to meet the Levy family (next year for sure!), I did meet Dr. Stein as did Robert. They became fast friends and we promised to participate in the International Epilepsy Day which is February 8, 2016. 

Fact: There are approximately 65 million people world-wide living with epilepsy (Epilepsy.org). 65 million people affected by epilepsy – not even counting families, friends and caregivers!

There were so many advocates at EADDL!

Julie Hutchison and
Robert in a  Mickey Mouse nose

Seeing Julie Hutchison, founder of the Chelsea Hutchison Foundation, is a delight for me (and obviously Robert). Julie’s foundation is a founding partner of the EADDL and has raised money to bring several families to the event each year. Also, through their advocacy, CHF recently gave their 84^th grant for a seizure response dog! Julie’s story is one of resilience yet is heartbreaking. Julie and her husband, Doug’s beautiful daughter Chelsea died from SUDEP.  They walk through that unfathomable grief to help others. Julie shared with me during one of our chats, “It is the reason I get up in the morning.” That kind of advocacy is an inspiration.

Julie is an inspiration.

Fact: Epilepsy is also a disease that can be deadly.  According to CURE Epilepsy, “It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents." 50,000! This number stuns me every time I read it.

The EADDL Educational Expo brought a day of speakers and a large conference room of advocates and exhibitors. The Expo was full of a wide variety of organizations sharing information (medical professionals, dietary experts, medical technology companies, service dog companies and many, many others. You can see the complete list here.) 

EADDL 2015: Expo Room

Another EADDL founding partner, the Danny Did Foundation, was at the Expo. CURE Epilepsy was there. The Purple Peace Foundation was there. Livy’s Hope, Sophie’s Journey, International League Against Epilepsy all were there.

EADDL 2015: Expo Room

Families visited each booth soaking up the information so they can be the best advocate they can. 

Fact: While two-thirds of people with epilepsy are able to find good seizure control, the fact is one-third do not (Epilepsy.com).  That is one-third too many!

Many advocates and organizations were borne out of the loss of someone to epilepsy or have been affected by epilepsy in some way and are advocating for the cure or management of epilepsy.

All an inspiration. All doing something to manage or cure epilepsy.

The day in Disneyland did not have had exhibitor booths but there were probably a couple of thousand families enjoying the park in their EADDL purple shirts. Each one of them an advocate in their own way for their friend or loved one with epilepsy.

Watch out, Epilepsy! You cannot win against this much advocacy.  

EADDL 2015: A Sea of Advocacy

Guest Post: Laura Caldicott, A Family's Story

The first annual International Epilepsy Awareness Day was yesterday but here at RobertsSister.com we are going to continue spreading awareness and education about epilepsy whether it is an official day, week or month. 

Mainly because we love purple!  (I kid – but I do love purple.)

I am pleased to bring you the story of Josh. Josh’s story, as told by his mom Laura Caldicott, is eerily similar to Robert’s.  Josh is only 11 but the beginning of his epilepsy journey is very similar to what I remember about Robert’s. Laura also includes additional information she wrote about epilepsy via a link in her story.

Thank you, Laura for sharing your family’s story with us! If anyone else is interested in sharing your story about epilepsy, please leave a comment below.

Our Son: The Epileptic

Laura Caldicott

Being a parent is the toughest job there is, but when your child has a lifelong medical condition it can get a whole lot harder. I have found this out for myself since my son Josh, now 11, was diagnosed with epilepsy four years ago. Ever since I can remember, I felt that something wasn't quite right with Josh but the symptoms he displayed never prompted me to consider epilepsy – a neurological disorder where intense electrical activity in the brain disrupts the body’s sensory functions. Dealing with the diagnosis has been tough for our family. This is our story.

Subtle signs

As a baby I noticed Josh would sometimes flutter his eyelids and make involuntary jerking actions with his legs. As he grew older these symptoms would occur more often – particularly when he was overtired – and sometimes were accompanied by brief periods of 'zoning out'. Still, I put it down to his age and wasn't worried. But soon after starting school his teachers picked up on it and advised me to seek advice from a pediatrician, initially believing there could be a possibility of cognitive issues or learning difficulties.

Diagnosis

I booked an appointment immediately and talked through Josh's symptoms. At this stage epilepsy wasn't mentioned but the doctor did ask me to take a short video of Josh's next 'zone out'. So I did and we went back. It was then the doctor referred us to a neurologist where EEG and blood tests were carried out. When the diagnosis of epilepsy came back I was stunned. Like many other people I associated the condition with tonic-clonic seizures – collapsing, shaking, convulsing. Josh just lost concentration for a little while, how could that be epilepsy? The doctor explained that the condition varies in terms of severity and that as Josh's brain matures he could indeed suffer some of these 'traditional' seizures. He asked if Josh had ever suffered a severe head injury or a brain infection such as meningitis. He hadn't but I had gone through a traumatic labor and he may have suffered a slight brain injury then. I guess we'll never know.

Moving forward

Back home we had to start adjusting to life with epilepsy. At seven years old, Josh was a little young to fully understand, but he knew he now had to take medication regularly and his TV/computer time was cut as we soon recognized this (as well as tiredness) to be a major trigger in inducing his seizures. One of the toughest things was that Josh was a keen swimmer and dreamed of learning to scuba dive. For a while I was terrified to let him in the water for fear of him suffering a full scale seizure and the prospect of scuba diving had to be ruled out altogether as a seizure underwater could be fatal. This upset Josh more than anything and the phrases 'it's not fair' and 'why me' were used a lot in the first year following diagnosis.

Josh is now 11 and is very responsible regarding his condition. He is accepting of the things he can't do and takes his medicine ritually. Despite this, however, the doctors were right and he has suffered two tonic-clonic seizures since diagnosis. It is a terrible thing for any parent to witness as you are completely powerless to stop it but I'm just glad that we had the epilepsy diagnosis before they happened otherwise it would have been too frightening to imagine. Also, we were prepared. We knew what to do which involved making him as comfortable as possible without moving him, supporting his head and removing anything dangerous from nearby that he could hurt himself on. Then we just have to wait for it to pass. It's something I pray I won't have to see again but sadly I fear that I will.

To any parent of a child with epilepsy, I know how tough it is and I urge you to stick with the medication, do your research and stay positive both for yourself and your child. With the right treatment epilepsy is manageable, if not curable so keep that in mind and work towards maintaining a happy, healthy lifestyle for your family.  

The Magic of Excellent: A Short Film

Today is the first ever International Epilepsy Day, created by The International Bureau for Epilepsy (IBE) and The International League Against Epilepsy (ILAE).  (Going forward, the official International Epilepsy Day will be the second Monday of every February.)

Robert is participating in the awareness initiative of the Epilepsy Awareness Squad who is partnering with IBE this year. Robert posed for the photo included here for them and they will share his photo along with many others who have epilepsy.

I am also thrilled to share the video that Richard, Robert and I made about his story and for International Epilepsy Day!!  (For those who saw my November Epilepsy Awareness Month videos, don’t worry – this is short!).  J

Regular readers know that Robert has a generally positive attitude but can be cranky depending on his medications, if he’s under the weather or having a not-so-super Super Bowl game. In spite of all this, Robert will – without fail – describe his situation as “excellent.”  I have a hard time grasping this “everything is excellent” attitude but think Robert really does believe everything is excellent.

That is the “Magic of Excellent” and my inspiration for this video.

Thank you for watching and please share with the hashtag #epilepsyday if possible.

Wishing everyone a lifetime of excellent and magic.