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: Calm The Storm Within

The interviews Robert’s Sister is running during Epilepsy Awareness Month have shown how many different stories there are about epilepsy.  (The project also is apparently making me talk in the third person!).

My goal this month is to have people tell their stories from the perspective of either  living with epilepsy themselves or of knowing someone with epilepsy or from the perspective of an organization – it’s goals, mission and what it hopes to accomplish for those with epilepsy.

On Wednesday, we interviewed Michelle Reichartz who was diagnosed with epilepsy at age 12.  Because she is such a private person, she didn’t share her diagnosis with people outside her family until she was 21. 

That’s a long time to keep something that is such a part of you a secret.

Then we met Alex DeYoung.  Alex is Michelle’s best friend and, by his own admission, her fierce protector.  I suspect Michelle felt safe with Alex which is why she opened up to him about her epilepsy.  From what I can tell, the two of them make a terrific team.

So much so, they co-founded the organization Calm The Storm Within.  They both told Robert’s Sister a little more about their organization. (There I go again with the third person!). 

Robert’s Sister:  Tell us what you do with regards to epilepsy – are you an advocate or medical professional or run an organization?

Calm The Storm Within

We run an organization called Calm The Storm Within. It is a non-profit organization geared towards discovering the root cause of epilepsy. We founded officially in September of this year and are currently focusing on advocacy and epilepsy education.  Sometime in the near future we hope to begin writing grants to fund research towards the root causes of epilepsy.

Robert’s Sister:   How did you get involved in epilepsy advocacy?  Do you have epilepsy or know someone who has it?  

One of our founders, Michelle Reichartz, has epilepsy. The birth of our organization comes from her frustration that no one in the medical profession has been able to explain why she has MAE, and the realization that the majority of research being done today is based around case management rather than cause discovery.

Robert’s Sister:  What is your mission with regards to epilepsy (treating it or advocating through the organization)?

Our mission is to begin providing grants to research specifically geared towards determining the root causes of the various types of epilepsy. We believe that truly effective treatment and, hopefully, one day a cure, comes from understanding how a disease begins. As we fund grants we will continue our current public education efforts.

Robert’s Sister:  There are so many stories – many sad stories – about those with epilepsy.  How do you continue to be passionate about your cause in spite of these stories?

Those stories are the stories that fuel our passion. We are working to restore hope to the epilepsy community. We work in the hope that we can start telling stories of survival rather than the stories of those whose lives have been shattered by the effects of their disease.

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

For the two of us, I would say it's definitely affected our dynamic with others. Whenever we're together, people immediately notice how protective Alex is of me. I've been dealing with this since I was young but Alex is still getting used to the little things that can cause my hand tremors or even a seizure. In many ways he's become more reactive to it than I have but in a few situations that's actually been a life- saver. We definitely have become closer through it than I think we normally would have.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or research? 

The greatness need for epilepsy awareness is that the community needs to make its voice heard. The portion of the public that hasn’t had their lives touched by epilepsy in a tangible way needs to be educated. As far as research goes, there needs to be more funding. In companion with that, the funding we do have needs to be utilized more efficiently and more effectively. The focus needs to be shifted away from making one more drug, or adding one more pill to an already oppressive regimen, and towards providing a regimen that is manageable, effective and affordable for all patients. We cannot achieve that without shifting the focus, at least in part, away from drug research towards tangible disorder research.

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

People with epilepsy are not their disease. It does not define who they are. It is terribly important if you know someone that does have epilepsy that you don’t treat them like a “Monster.”  Because they have a largely misunderstood condition, they already feel like “Monsters” and every effort should be made to prove to them that they are not.

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

Above all else, we are driven by the stories from others that we hear. My story has been very mild compared to others with epilepsy and for us; we've been driven by that. Because my case is so mild, I want to do more in the epilepsy community to further the understanding of the condition for those who can't stand for themselves. We want to find answers to why some cases are life-threatening and damaging compared to others like mine who are slow, easy to maintain, and take their time eating at your psyche at moments.

Robert’s Sister:  Please tell us a bit more about your organization and how we can contact and support you.   

Calm The Storm Within already has a website and a Facebook page. The best things you can do for us right now is to go to both of them, share them and our cause with your friends and family – complete strangers even. We are a very young organization yet and getting everything set up is a long process, particularly when we both work full time.  Eventually we will have ways for you to support us beyond sharing our message with the world.

To learn more, visit us at: www.calmthestormwithin.org and ww.facebook.com/calmthestormwithin

Robert’s Sister:  Thank you, Alex and Michelle, for sharing your passion for epilepsy education and awareness!

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.

 

What Epilepsy Means to Me: Alex DeYoung

Yesterday we met a remarkable young woman, Michelle Reichartz.  Michelle was diagnosed with epilepsy at the age of 12 (ack! Right before the often times difficult teen years!).  Today we meet her best friend, Alex DeYoung. Together, they have dealt with Michelle’s epilepsy and residual effects of medications and have even started an organization to help others.  I have been so impressed with these two that we will learn even more about their organization tomorrow. 

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


Alex DeYoung

Michelle was first diagnosed in 1999, well before we had even met, so apart from what she’s told me about the process of getting her diagnosis, I know very little. We met in the winter/spring of 2008, and she first told me about her epilepsy in June or July of 2009. The day she first told me we had gone out to dinner on the lakeshore. She didn’t have a drop attack, but the combination of an unusually strong margarita and her epilepsy put a quick end to what was usually a very long evening for both of us.

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

Understandably, seeing her that way scared me. The way she revealed it was actually very casual but as she’d tell you, I was extremely protective of her until I dropped her off again. As a person who, like most, knew very little about what epilepsy actually looks like, to not physically see her having a seizure was confusing to me. I have another friend who also has epilepsy as a part of a larger condition, but he has Grand Mal seizures and has never had one around me, so while I was aware of epilepsy as a condition, I only had what I knew of his seizures to go on as to what a seizure looks like. I had no idea they could appear to be harmless until I met Michelle.

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

I don’t necessarily know if MY family has treated her any differently since I’ve told them about her epilepsy. I’ve always made a point to treat her as if she doesn’t have epilepsy. Having that revealed to me later on in our relationship, after we had grown much closer as friends, has always made that easier because I had a good basis for the person I know she is. I do feel like learning to live with her epilepsy as it progresses and changes has brought us closer together though.

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

For the few classes we did have together; I know they didn’t treat her any differently in college. Before then, I can’t really speak to, but I know you interviewed her too so I’ll let her answer that. [Editor’s note: Michelle does answer this question so check out the interview yesterday for her answer.]

Robert’s Sister:  What treatments has Michelle tried?   What has worked?  What hasn’t worked? 

Since I’ve known her, she’s been inactive and off of any medications, so that’s another thing she knows more about than I do. For a while she had very little to control her seizure activity but in the last couple years, her tremors and other little subtle things that would tell you something isn’t quite right have become more pronounced. She switched over to the Ketogenic Diet and it has made a huge difference. I really notice a difference between when she’s off the diet and when she’s on the diet. There are a lot of little things that strangers don’t notice but I pay particular attention to.

Robert’s Sister:  Do you think the medications affect how Michelle feels? 

I know they have. She’s off of them now but because she was on them through the majority of her teens, a lot of her ability to express how and what she’s feeling effectively is really hampered. I’ve seen a lot of healing and progress along those same lines though in the short time I’ve known the extent of her story. The aftermath of her medications is something we spend a great deal of time coping and learning to live with.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

I hadn’t until Michelle came to me with this idea in late 2011. I’ve always been one to tell her that she’s never had a truly “crazy” idea and this was no exception. She called me kind of hoping that I would tell her she was crazy for thinking it, but that’s not my style. What made me want to get involved in helping Michelle co-found Calm The Storm Within was passion in her voice when she talked about it.

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

We deal with her epilepsy on a daily basis and it’s an eye-opening experience. I’ve learned to pay more attention to her body language and the look in her eye than to the words that are coming out of her mouth at times. It’s taught me to be way more patient with most people. It’s certainly taught me the importance of prayer and patience. I pray every day that we’ll continue to have patience with ourselves and each other as we learn to deal with what today has brought us. Every day is a brand new experience.

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

I try not to focus on which one is my “favorite” because I still have the gift of being able to create new memories with her. She would be the first to tell you that I’m a hopeless romantic at heart and she’s right. Every day I get reminded of how much she means to me.

Robert’s Sister:  Do you ever wish Michelle didn’t have epilepsy?

Every day but it’s a very pragmatic wish. I wish she didn’t have it but the reality is that she does and we both have to live with that. I don’t love her any less because of her epilepsy and that won’t ever change. I know that there are many people out there who aren’t as fortunate as I am to have a loved one whose epilepsy hasn’t crippled their ability to lead a normal life. So rather than wish the situation was different I choose to live in hope that she will continue to be blessed with the ability to live a largely normal life.

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

People with epilepsy are not their disease. It does not define their life, and it shouldn’t color your opinion of them.

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

In order to cure a disease, it takes three things; education, understanding, and effective funding. We need to educate the public about the reality of the scope of epilepsy, then we need to focus on funding understanding the causes so that we can more effectively and efficiently treat patients, as well as ensure that no one has to suffer the burden of mystery that Michelle has. Everyone who has a medical condition should at the very least be afforded the courtesy of being able to understand why this has happened to them.

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

Michelle and I have co-founded a non-profit called Calm The Storm Within. Through it we hope to fund grants focused on understanding the root causes of epilepsy. We have both a website and a Facebook page.  Our website is www.calmthestormwithin.org and our Facebook is at www.facebook.com/calmthestormwithin.  

Robert’s Sister:  Thank you, Alex, for sharing your epilepsy story!

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.