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

Epilepsy Awareness Month Day 10: It’s A Small World

When Robert was diagnosed with epilepsy as a child our family believed epilepsy was a rare condition. I have no idea why we thought this but it is actually very common (and the belief that epilepsy is rare is a common misconception). 

We finally got to see It's a Small World! 

According to the Epilepsy Foundation, “Epilepsy is the 4th most common neurological problem – only migraine, stroke and Alzheimer’s disease occurs more frequently.”  

Epilepsy is not a rare condition but there is terrible stigma still associated with it. The more we talk openly about epilepsy – the more mainstream it becomes to talk about it – the less room there will be for the stigma.

Talking about epilepsy, understanding epilepsy and knowing as much as possible about epilepsy will squeeze out the stigma.

One way epilepsy advocates are helping to spread epilepsy awareness is through the Epilepsy Awareness Day at Disneyland and the Epilepsy Expo.  It was terrific meeting so many people affected by epilepsy. It amazes me how many wonderful epilepsy advocates there are!

There must have been at least 1,500 people at Disneyland in purple “Epilepsy Awareness Day at Disneyland” shirts! It was inspiring to walk through the parks seeing how many others are affected by epilepsy, all doing their part to raise awareness.

Epilepsy is not rare and neither are the people advocating for education, treatment and a cure.

What better way to spread awareness than at the Happiest Place on Earth?

We loved meeting Cindy Mitchell who pulled this event together and whose son, Robert, has epilepsy.  Our Robert got a kick out of meeting Cindy’s Robert and was tickled they shared a name and a love of card games. Cindy is an ambassador for the Danny Did Foundation and a patient liaison for Realm of Caring.

We met the lovely Julie Hutchison of the Chelsea Hutchison Foundation – an inspiring woman who participated in our 2012 Epilepsy Awareness Month interviews.

Robert was particularly thrilled to meet (and be recognized by) the teens of the Epilepsy Awareness Squad. They recently featured Robert’s story on their website and meeting them felt like meeting old friends.

Robert talks about meeting other people with epilepsy while at the Epilepsy Awareness Day at Disneyland and his excitement is evident.

After all, it really is a small world!

Speedy Shines: A Turtle (and author) With a Big Heart

Robert with Speedy Shines

I first met Gina Restivo during the Robert’s Sister Epilepsy Interview series in November. Gina is a children’s book author, terrific mom and fellow avid coffee drinker who continues to amaze me. She first wrote the children’s book, Fly Danny, Fly and included a dedication page in that book to the Danny Did Foundation which was created after 4-year-old Danny died of SUDEP.  (If you’re a regular reader of this space you know 50,000 people a year die as a result of epilepsy related causes).

I was excited to learn Gina had a new book, Speedy Shines, coming out and anxiously awaited the opportunity to purchase it. Sure, it’s a children’s book but it was about a turtle!  (We have a turtle so I’m partial to turtles). 

Once our copy arrived, I showed it to Robert and told him people who buy the book help two groups who help people with epilepsy. Robert liked that. (The Chelsea Hutchison Foundation and the Danny Did Foundation are two foundations who were created after the founders’ families both lost a child to epilepsy).  

Robert wanted to read the book.  Robert is able to read but it is slooow going.  Reading about a turtle seemed appropriate.

Don't interrupt me - I'm reading

Throughout the afternoon I checked on his progress and noticed he read each and every page thoroughly. Part way through, I asked him how he liked the book so far and he said, “It’s a nice book.”  (Robert is a man of few words.)

I let him get back to reading.

Once he was finished, Robert declared, “I had a fun time reading it.”

It was my turn to read it.  The illustrations by Martin Heraty were colorful and whimsical with delightful details (on one page, Speedy is reading a stack of books, one of which is named “Finding Your Inner Shell”).  Cute!

The story was sweet and heartwarming.  Even though he was surrounded by friends and was making the most of his original home, Speedy felt a tug at his heart and realized he had to muster the courage to find what he was missing. Speedy was searching for where he truly belonged and had to decide if he should follow his heart to find it.

Courageous indeed!

I’m not a professional reviewer but I know enough not to give away the ending so you’ll have to read for yourself whether or not Speedy finds what he was looking for!

Gina Restivo says, “I think that Speedy Shines is a wonderful way to bring epilepsy to the general public with the dedication page to The Danny Did Foundation and The Chelsea Hutchison Foundation at the end of the book. There are a few statistics on that page that will hopefully shine a light on epilepsy while bringing kids a cute story about a turtle who found his shine once he found the right light for him. This book is a way to involve more than the epilepsy community in the fight for a cure. Speedy Shines and is so inspired by those struggling with epilepsy and I feel certain that if the general public is given a window to see what I do, they will be inspired too!”

Gina shines in her work to bring about broader awareness of epilepsy and is due many thanks for her work!  

Once you read the book, let me know in the comment section how much you enjoyed it. 

Shine on, Speedy!

What Epilepsy Means to Me: Epilepsy Resources and Organizations

Today is the last day of Epilepsy Awareness Month – the “official” Awareness Month, I mean. 

As anyone who is familiar with epilepsy knows, there’s also the “unofficial” eleven other months we spread awareness, advocate, and take care of seizure and medication challenges. 

Through the interviews this month, I learned so much about not only epilepsy but about the resilience and spirit of people. About overcoming obstacles and not giving up.  About dealing with unthinkable loss and doing so much for others anyway.  About wanting to become involved because of the passion for this cause.

About just wanting to be heard.   

Robert is the reason I'm passionate about
epilepsy awareness and education

Some people shared with me they had never told their story of epilepsy before.  One mom told me her friends and family have a better understanding of her situation now. 

Several months ago, I wrote about a few epilepsy resources who I found to have great information as well as strong advocacy efforts.  This month, I have learned of so many more!  Included in this additional list are the organizations and websites of those who were interviewed. 

Many of those interviewed also recommended websites they are passionate about and I will cover those in a future post. 

Christy Shake: Calvin’s Story.  My favorite quote from Christy was, “I want to kick epilepsy’s ass.”  That’s all you need to know about Christy.  That and she’s smart, a terrific writer and a tireless advocate for her son.  She writes one blog post a day at Calvin’s Story and partners with CURE: Citizens United for Research in Epilepsy to raise funds for a cure here.    

Linda and her son, Jason.  Linda and I have shared many stories since we’ve met because her Jason and my brother, Robert, are so similar.  Linda is a devoted mom and also does fundraising for CURE Epilepsy in Jason’s name here.

Susan Noble, Epilepsy Warriors Foundation.  Susan said in her interview, “As President and Founder of the Epilepsy Warriors I am striving to reach as many people within the local communities to help educate and bring an end to the stigma of epilepsy.”  She’s a warrior herself so I have no doubt she will succeed! 

Michelle Reichartz and Alex DeYoung, Calm the Storm Within.  These two best friends found a shared passion: epilepsy.  Michelle shares in her interview, “All I've ever wanted was to understand what's happening to me and that's what CTSW is all about for me. No matter what, I just want to understand how epilepsy works so hopefully we can begin to better manufacture ways to control the cause.”  Michelle and Alex have set a goal for their Facebook page likes in November so, please take a minute to “like” their page.

Gina Restivo, Fly Danny, Fly.  Gina has become a passionate advocate for epilepsy research and made a terrific point in her interview, “when it comes to actual funding for research, there needs to be a public outcry from more than those suffering with Epilepsy and the foundations supporting them.”  She is so right!  Everyone – affected or not – needs to be involved in finding the cure.  A portion of the proceeds from the sale of Gina’s book goes toward the Danny Did Foundation. 

Julie Hutchison, the Chelsea Hutchison Foundation.  Julie and her husband founded an organization in Chelsea’s name after suffering the unbearable loss of their daughter.  They have helped many, many people with epilepsy and their families through their organization.  Julie reminds us in her interview, “Be your own advocate!  Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective.” 

Mandy Krzywonski, My Life as Mandy . . . with Epilepsy.  For someone who is only 19 years old, Mandy has accomplished an awful lot!  She runs a popular blog, donates care baskets to children in the hospital and runs several support groups on Facebook.  She’s got something for everyone!

Connor Doran, Dare to Dream.  Another successful young adult!  (Boy, I better get with it!).  Connor has been a Top 12 finalist on America’s Got Talent with his Indoor Kite Flying act. He performs all over and is a role model and inspiration for many with epilepsy (and many without!). 

Many of these organizations also have their own Facebook pages providing additional information and many can also be found on Twitter.  I encourage you to “like” their pages or follow them on Twitter.

The interviews are over (for now) but if you’re interested in telling your own story about epilepsy or know someone who wants to tell their story, please contact me at robertssister@att.net.  I plan to share the stories for as long as people want to tell them!

Thank you all for your support during Epilepsy Awareness Month!  Reading the interviews, posting comments, indicating “likes” and “shares” on Facebook and RTs all meant the world to me.  (Especially the RTs since I’m a Twitter addict). 

So what’s in store for December?  Should we have a new interview every day about the holidays?  (That’s my husband you hear screaming in the background.)

They may not be every day but there will be more posts about epilepsy, advocacy, the working caregiver and, of course, Robert!  Maybe one or two about the holidays . . .

 

What Epilepsy Means to Me: Julie Hutchison and her daughter, Chelsea

The stories here during Epilepsy Awareness Month have all touched my heart in some way. I find the epilepsy community – those with it, their caregivers, family and friends as well as supportive “outsiders” – to be inspirational, tenacious and giving.

Chelsea’s story is all those things and more and her story has brought me to tears. Maybe it’s because I have two daughters now in their early twenties but who were goofballs through their teen years, much like Chelsea. It might be because of the extreme admiration I have for Chelsea’s family who are driven to help others even after experiencing an unthinkable loss. Their anger and grief turned to advocacy and action through their Chelsea Hutchison Foundation.

My heart is touched by these stories and they are an inspiration to me every day.

I hope they are to you too.  

Robert’s Sister: When was Chelsea first diagnosed?  Tell us about the process of getting the diagnosis. 

Julie and her daughter, Chelsea - such love!

Chelsea had her first seizure at her 11th birthday party.  Her "suite" was in our finished basement and we had decorated it with strobe lights and disco balls.  She had a group of eight girlfriends over for the night.  Chelsea was known for being very dramatic and theatrical and about an hour into their celebration, a couple of the girls came running upstairs saying Chelsea was pretending to have a seizure and they didn't think it was funny.  They wanted me to stop her. It didn't take long to realize she wasn't pretending.  Needless to say, that is a quick way to end a party.  A couple of the little girls had to go home, but five of her friends lined up under her while she was on the couch in our upstairs family room for the rest of the night.  I was so touched by those who stayed.   

 

Robert’s Sister:  Tell us about the information (or lack of information) the doctors gave you about epilepsy when Chelsea was diagnosed with and then treated for epilepsy.  

 

My mother started having occasional seizures when she was about 60.  It was never determined why and they were so seldom, that she was not medicated until she had a seizure in the bathtub and seriously hurt herself.  My mother passed away in 2007 and when I found her, it was obvious that she had experienced a seizure.  I went to both my mother and Chelsea's neurologists to ask if we had anything to be concerned about with respect to Chelsea's seizures. In both cases, I was told no.  That it most likely had something to do with my mother's age (77 at that time) and her heart.  We went along our merry way; just dealing with Chelsea's occasional seizures as a minor inconvenience when less than two years later, a seizure took Chelsea's life as well.  I was there asking for the information and was not given any.

 

Robert’s Sister:  How did you feel when Chelsea was first diagnosed with epilepsy? 

 

Sadly, our neurologists never referred to it as epilepsy, but as a seizure disorder.  It wasn't until I asked for copies of her records that I saw the word.  Epilepsy was not discussed in my mother's case either.

 

Robert’s Sister:  Did your family treat Chelsea differently after the diagnosis?  If so, how?  

 

We were truly blessed by our family and close friends.  No one treated her differently at all.

 

Robert’s Sister:  Did the kids at school treat Chelsea differently because she had epilepsy?  

 

Her friends were wonderful to her.  While I'm sure there were things said that Chelsea did not hear, her friends held her close and protected her.  I remember Chelsea being somewhat offended by a comment a teacher made in general about "causing a seizure." The next day Chelsea faced that teacher and told her that she did not appreciate the comment and that seizures were nothing to joke about.  I was so proud that she dealt with that so head on.

 

Robert’s Sister:  What treatments did Chelsea try?  How did they affect her?   

 

Chelsea had been on Zonegran, Lamictal, Keppra (briefly) and Depekote. While I believe she was most stable on Lamictal, they were always looking for that one medication that would keep her from having break-through seizures.  She averaged only 4-5 tonic clonic seizures a year, even went an entire year without having a seizure.  She did have minor absence seizures daily, but they didn't really affect her.  She maintained (almost) straight A's.

 

Robert’s Sister:  Tell us about your Chelsea Hutchison Foundation – how it started, how it has grown.   

 

Losing a child is not something you ever plan for.  When we lost Chelsea, people wanted to make donations to a cause in her memory, and we were in no shape to make those decisions.  We set up a memorial fund, knowing we would someday want to do something special in our precious girl's name.  As months passed, Chelsea's love for dogs kept surfacing.  When we learned that there were service dogs that could aid those living with epilepsy, we knew that was where we would start.  In addition, the more we knew and began to understand about SUDEP, we knew we had to speak up and keep other families from being blindsided.  We did not have the energy to "take on" the medical professionals, so we chose to gently raise public awareness. 

 

Our first fundraising event was in April, 2010 when we invited friends and family into a small neighborhood restaurant for dinner and a silent auction.  We packed the place and raised our first $15,000.  That fall, we orchestrated Chelsea's 1st SUDEP Awareness Walk in Littleton, CO and raised another $15,000.  Our Annual Gala takes place each year in April - the month we lost Chelsea.  We do that to keep moving during that difficult time.  Chelsea's Epilepsy Walk for SUDEP Awareness takes place in September, Chelsea's birth month (for that same reason) and has grown to include four states (CO, VA, MO and KS) and we have virtual walkers and teams across the US.  This past September, we gratefully raised $50,000.  We have been contacted by others and it is possible that Chelsea's Walk could be in 7 states in 2013.   A dear friend has reserved 48 cabins for Chelsea's Cruise to the Yucatan in June, 2013.  We are hoping this will also become a yearly event to raise awareness.

 

Robert’s Sister:  What is your mission with regards to epilepsy? 

 

To save lives and to bring some peace and support to those families dealing with all that goes along with seizures and epilepsy.

 

Robert’s Sister:   How has epilepsy affected your life? 

 

Ugh.  Losing my daughter has changed me forever.  Losing my mother was excruciating as well, but on some level, you know you will probably lose them at some point - at least you are somewhat prepared.  Losing a child and believing if we had known to be concerned we might have been able to save her is beyond words.  I HATE EPILEPSY!  I don't want ANYONE ELSE to ever know this pain!

 

Robert’s Sister:  What is your favorite memory of Chelsea?    

 

I could go on from now until the end of time talking about my favorite memories.  She was such a character and so creative.  She would light up a room anytime she entered.  A few months before we lost Chelsea, she had become somewhat unstable during a medicine change.  So much so that she was afraid to leave the house and especially afraid to go to school for fear of having a seizure and "embarrassing herself."  Her school offered her a home-bound study program and it was such a sense of relief for her.  During the stress of what she was going through, I remember her telling me that while what she was going through was hard, she loved having the extra time with me.  Sigh!!  She was quite a Disney Princess and typically in character.  When she was very little, I walked down the hall to find her lying on the floor with her feet crossed just outside her bedroom.  She was cranking her head around to see me as I approached her.  I asked her what she was doing and she told me she had been waiting for me to help her.  You know, mermaids can't walk and she needed to be carried into another room. 

 

Robert’s Sister:  What do you want people to know about epilepsy? 

 

Be your own advocate!  Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective.

 

Robert’s Sister:  Is there anything else you want to say?  

 

While I would give anything - ANYTHING - to have my daughter by my side, I have to say that I have met the most amazing people through this journey.  While many of my friends have been there for me through thick and thin, my address book has certainly changed.  I look at each and every one of the amazing people I have met through this loss as gifts from Chelsea!!

 

Robert’s Sister:  Please tell us how we can contact and support your organization.    

 

We are constantly fundraising to be able to help more people.  To date, we have provided 43 grants for seizure-response dogs, 82 Emfit monitors and 7 SmartWatches.   We welcome any type of participation you are willing to provide. [Editor’s note: For more information, please visit The Chelsea Hutchison Foundation at www.chelseahutchisonfoundation.org]

 

Robert’s Sister:  Thank you, Julie, for sharing Chelsea with us.  She has touched my heart and am sure many others will benefit from knowing Chelsea’s story and from the great work your organization does. You are an inspiration.  

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.