As I sit today reflecting on my daughter’s journey with epilepsy, I am grateful. In her ten years, she’s now had epilepsy for almost half of her life. We received an official diagnosis of Juvenile myoclonic epilepsy (JME) or Janz Syndrome, four months ago, when we were able to take her to a premiere medical facility. For the first time, she’s on a path to being able to do everything a busy little girl should do. All because of a medication change. It took four years, more medications and therapies than I can remember, countless EEGs, too many lab draws, and a seemingly endless line of neurologists, epileptologists, residents and experts to get where we are today.

Looking back on that long road reminds me of a quote Mr. Fred Rogers used to teach children who watched his show- “Look for the helpers.” If you’re afraid, alone, scared, worried, hurting or anxious, find the people who are helping others. Chances are, they’ll help you, too. Nothing could be more true for our family. The medical professionals, as well as the epilepsy community and our own local community have lessened the worry and fear in so many ways, big and small. A hot meal from a kind neighbor after hours spent in an emergency room, a personal meeting with an epilepsy advocate to provide sound education about living with seizures, a well-intentioned politician working on legislation to help families like ours – all of these things have helped us tremendously and we couldn’t have come this far without a single one of them.

Friends, I implore you, if you’re a patient or a caregiver, friend or advocate, use all of the resources available to you. The epilepsy community is filled with wonderful foundations, organizations, and activists who are ready to help YOU. Ask your care team for referrals or find epilepsy support online. Epilepsy is a journey, but it is not one you have to endure alone.

Learn more about epilepsy and read more stories at Epilapsey.com.

My doctor, in response to my relative hopelessness at being diagnosed at 16 years old with such a daunting disease, looked at me in the eye and remarked, “Young man, you have epilepsy. You can’t let it have you!” She shared all of the following, but most of it had to be realized organically as I wrestled with my diagnosis. How much time did I waste before these truths were a part of my understanding of being an epilepsy patient? Now, as a pediatric epileptologist, these are topics that I try to stress to my patients.

You are NOT defined or identified primarily by this disease. Don’t believe you have a name tag on with EPILEPTIC in big red letters. While a seizure disorder may reframe how you will live your life, and change some things that others take for granted, you mustn’t let it be the prism through which you live every experience and make every decision. In many ways, the lessons I learned from my epilepsy about how to treat people, about courage in the face of adversity, about myself and what really matters about life, have been an unexpected positive.

Information is POWER. Don’t hide from the diagnosis; learn about it. Find people who know more about the disease. Call or visit the website of your local Epilepsy Foundation (or other advocacy group). Epilepsy can be very isolating, but it shouldn’t be. Find mentors who understand what you and your family are going through. It’s very common, and there are numerous resources to keep you informed. It can be a scary disease— be empowered, knowledgeable, ask about things you don’t understand.

Find a doctor that you like, even if that takes time. This was the most important piece of my early experience with my diagnosis. Understand that epilepsy is a difficult field, and not all health care professionals are comfortable with patients who have seizures. Know that the medications, devices, diets, genetics, and surgical evaluations are always changing and require someone who spends a lot of their life learning about managing epilepsy. Find someone who will see you as more than your seizures. Don’t stop searching until you’re with a health care professional who will explore how to accomplish your hopes and dreams, even if these look modified.

It’s ok to get mad. It’s ok to grieve and to mourn. You will find out who is going to stick by you with this new diagnosis, and that will likely surprise and hurt you. You may feel as if your plans and expectations are unachievable. What you took for granted will now seem hard or impossible. These are appropriate feelings and are unfortunately very common in patients with new onset seizures. Look for people who have done this before for guidance. If appropriate, find a counselor to unpack these feelings with you. It’s all too common for patients, especially teenagers, to respond to the diagnosis, but struggle with how they’re coping with a new diagnosis.

Lastly, as you become comfortable with your diagnosis, advocate for yourself and others. Look for a chance to educate those around you. If you’re freaked out by this, they will be too. If you’re knowledgeable and willing to talk about it (even the embarrassing parts), they will likely be interested in hearing from you. Know that there will always be someone new to the disease who will be going through the same struggles, and you may be the only person in their life empowered to help them. Your story, in its immediacy, can feel crushing, but it may, one day, be another person’s life raft as they adjust to their own diagnosis.

Read more stories at Epilapsey.com

At the onset of my epilepsy, all I could remember is that I was headed to recess and boom! Next thing I know, I woke up in a hospital bed. I didn’t recall anything else that happened to me after heading to recess. Even to this day, I don’t remember it. That particular seizure kept me in the hospital for a week. It took me an entire week to regain my strength and become my old self again. After recovery, I didn’t have another seizure for an entire year. I almost had forgotten about that seizure until one day I went into status epilepticus. The seizures kept on coming non-stop without a warning. Again, I don’t recall much about that day when the seizure returned. However, from that day on I was diagnosed with epilepsy. I’m not sure if life changed for me, but I had a new normal. I had so many ups and downs over the years, but I try not to let my epilepsy stop me. It was hard and I’m so grateful for everything. I wanted to write a letter to my 9-year-old self. And give young Derra a heads up that life with epilepsy will be just fine!

Hey Derra,

I know you just had your first seizure. And you don’t know what happened. That’s ok, I’ll fill you in-you had a seizure in the snack line at school. It isn’t the end of the world for you! Ok?! You will stay in the hospital for a week and fully recover. You’ll be back to yourself in no time. But, within a year you’ll have a pretty bad episode (status epilepticus). I know that sounds super scary and it will be at the time. But you won’t remember a single thing. You’ll feel the aftermath which is a horrible headache. Then you’ll be diagnosed with epilepsy from this point on. Don’t look at it as a bad thing. Accept the diagnosis. Not only accept it, but learn from it.

Now, you will experience a “new normal” that you will have to adjust to. Are you ready for it? I hope so. You will have an epilepsy doctor which is called a neurologist. Please be nice to your new doctor. You will have to start taking epilepsy medication. Let’s be honest, you may not want to do it at first. It will be a struggle for you and your parents, but it doesn’t have to be. Take the medication for yourself. I’m telling you about this because you will find it hard to accept your diagnosis. Not taking your meds will not get your “old normal back.” It will just delay the process and make your epilepsy worse. Just know that your medication prevents you from having a seizure. Take the medication!

Your parents are afraid to death. They don’t know what to do. At first, this will be hard for you and your parents to adjust to. Ask your parents to seek the very best neurologist, join support groups, learn about ALL the medications before all the trial and errors. Have open conversations about epilepsy. Check out all the side effects of the medications. Help them. Tell them to have questions for the doctors! Be strong and communicative for your parents so they won’t be so scared. Tell your parents to get you a neuro-therapist to help you through this journey.

Be fearless, love yourself, be vulnerable, and YOU ARE NORMAL!! When you first get diagnosed with epilepsy, you want to go into a shell and hide-DON’T! Keep your playful personality and don’t feel so self-conscious because of your epilepsy. You will start to feel distant and reserved because of it, change that feeling! You are so fearless. Now, enjoy your childhood. Make sure to let your teachers, friends, and family know what to do when a seizure occurs. Don’t let anyone treat you differently because you have epilepsy. Speak up and let them know exactly what epilepsy is.

Having epilepsy isn’t a curse. Don’t ever feel like it is. You have the power to start now to be vulnerable with others about your epilepsy journey and spread awareness. I know you are only nine-years-old and you don’t know how to feel. Know that your vulnerability is your super power. Being able to accept yourself as you are is an amazing strength. You won’t need to ever hide the fact that you have epilepsy. And don’t! Be proud. Stand up. Because at the end of the day you have epilepsy, it doesn’t have you!

Just know YOU ARE NORMAL! Don’t let anyone tell you differently! Your normal may look a little different. Be the one to spread awareness about epilepsy. You will experience times where you feel different and that’s ok. Don’t let it keep you from your happiness, who you are, and your goals. You are beautiful inside and out. You can do anything you set your mind too (for real). You are fearless. You are an epilepsy warrior. Love you kid!

You got this!

Your parents taught you that even though you have epilepsy, it is possible to still live a normal life. To help your safety, their fear, and judgment against you, you/they informed various adult leaders right away and after a few encounters would tell the kids. Once you understood the story of your first seizure and how blessed you were to be alive and functioning as well as you were, your dream became to be a voice for people with epilepsy and to raise awareness. You started to do a lot of fundraising, spread awareness, and were asked to go to Kids Speak Up. You or your parents would share information like what a seizure is, what yours looked like, what your aura was, seizure first aid, myths surrounding epilepsy, and when to call 9-1-1 when with you. With adults whom watched over you, we would also share the following: what your medicine was, how much you took and when, did food need to go with it, and your neurologist's name and number.

To help combat some memory problems and slow processing that came as a result of your seizures and medicines, you created your own 7 day habit of writing papers, 5 day habit of studying for tests, and how to prioritize homework. You graduated from a four-year Division 1A University on time despite seizures coming back in your senior year after several years of dormancy. You had a Bachelors of Science in Business Administration with a Major in Marketing, a Minor in Psychology, finished with a 3.18 overall, and a 3.55 in business. Throughout life, you would go in with a teacher to get extra help in grasping atopic when needed. You had brain surgery in 2013. You were taught an important point when you were looking at hospitals that made you decide where to go and that is that success after brain surgery means different things for different people and does not mean that you will be off medicines or become seizure free. For you, life has been overall successful since then as you are five years seizure free, can drive, talk faster, write faster, have better reaction time, and more.

That being said, there are probably some things you could’ve done differently:

1. Talked to a psychiatrist or counselor regularly

2. Done extra schooling asap after brain surgery

3. Throughout life, you should have just had a few close friends. In college, you should have not done as many clubs and things to try to help your resume.

Be sure to ask your doctor what treatment options are available. There are a lot of options out there and you should find what’s right for you. Stay safe, be smart, be open, and remember your neurosurgeon said you will be on medicines the rest of your life.

Matt

Learn more about epilepsy and read more stories at Epilapsey.com.

Epilepsy. Seizures. Triggers. Strobe lights. Migraines. Fatigue. Auras. Anxiety. Depression. Memory problems. These are a few things that I had to learn about when I turned thirteen. Five years and many medications later, I would have brain surgery, which made things worse. It's been a long journey, but I'm here. What do I wish I had known in the beginning? You HAVE epilepsy, that does not mean you ARE epilepsy. Educate your friends, you'll be surprised at how many are willing to learn. Find support groups, you AREN'T alone. Cognitive therapy can work wonders with your misfiring hippocampus. Do research! I was shocked to find out how much of my "personality" was epilepsy-and-medication-induced! (i.e. OCD and hypergraphia) This will be a long journey, so start focusing on things to be grateful for, and above all else, don't give up.

I have a gift. I possess the power to fight electrical storms in my brain. It's so much more than a pill, it's my entire outlook on life. It's my will to be defined how I choose, not by a diagnosis. Currently, a new medication saved my life. I only have tonic-clonic seizures if I miss a dose, or am sleep deprived. I still have little ones that only I notice for the most part. I have a good life. Together, all of us epileptics, can "seize" the day.

Learn more about epilepsy and read more stories at Epilapsey.com.

Do not be afraid, your life is about to change forever. You are 5 years old. You are about to be diagnosed with Epilepsy, a condition that makes you go quiet for a few seconds... Dad is concerned and has found you the right doctor to look after you. They will give you small pills to take. That will be hard to do, I know you will hate taking them, but you must as they will help you. The worst part will be seeing if there is enough inside you. For that they will need some of your blood. It will take some help to hold you down, you will be very scared, try not to be as it does not hurt. Let them take it, it will all be okay.

Mom and Dad are going to hold you back from certain types of play. They are scared you will get hurt while playing. It is okay, they mean well because they love you and want to keep you safe. Yes, I know it is hard watching all the other kids ride bikes…, But there many other types of play you can do.

Soon you will be starting school and meeting lots of new kids, but your quiet moments will continue. At home you are safe and protected, but at school you are like everyone else, it will feel nice. Enjoy school, enjoy the new kids you meet, and enjoy the playground. You also have a great neighborhood with lots of open fields to play in, so have fun.

A couple years have passed for you now and your quiet moments have gotten a little longer. The pills will be different, they will change a few more times. Some will be very “yucky.” I know you still do not like them and hide some of them, take them as it is so important. By this time you will have moved to a home with a pool. You learned how to swim early and WOW, Mom lets you swim by yourself. Such a change from before, thank Mom for letting you swim by yourself, that is a BIG DEAL!

This will be a lifetime friend you carry with you, take care of yourself.

For almost forty years it will disappear from your life only to reappear later. Do your best to help Mom and Dad take care of you. Do your best to handle what life has given you, do a better job than I did. I already know the person you have the potential to be, so be yourself....

All my Love, Mark

Learn more about epilepsy and read more stories at Epilapsey.com.

You lie awake at night sometimes and wonder if you are floating above your bed. You love that big, bright Moon in the sky, and then suddenly she really, really scares you, and you don’t understand why. Right? You have walked into a place you don’t know and have felt like maybe you were there before. I want you to know that it is ok to tell Mami about all of this and that the doctors won’t think it’s silly if you mention the warm sensations that go up your arm and into your head. Ask the doctor about that cool purple bracelet you saw and remember that the picture of your brain is yours to keep. I saw you read the whole report that came with it and it didn’t even scare you. Those big words that you couldn’t understand just made you more curious. You are such a brave girl!

You believe that the people in the long white coats have a really important job to do. You can do what they do one day, too, if you want. Any decision you make is your own and it is the right one for you. If something doesn’t feel right, listen to yourself. Give your inner voice time to say what she needs to and remember that you are loved and worthy for who you are, and not for what you can and cannot do. There are many paths in life to follow and it is ok to not want to do something and to change your mind about that. You can even explore your paths as stories and share the stories that you want to with the world. There is nothing to be ashamed about including all the things you’ve been through - the surgeries, the therapies, the medications, and the weeks in the hospital. Your story is a brave and powerful one, and not everyone will understand its meaning. There are people out there who will know what you are trying to say, and you will find those other voices also asking you to hear their song.

It is ok to cry. Just know that the seizures are not your fault. The stroke was not your fault. The times you got injured or couldn’t remember things were not your fault. They just were what they were, but you are who you are as Natalia, growing and changing, and you breathe this air.

Your life on this Earth is fully and openly yours.

Learn more about epilepsy and read more stories at Epilapsey.com.

I’ve lived with epilepsy for 53 years. I was diagnosed at the age of 2 with grand mal/petit mal seizures. Living in rural Kentucky, my parents had difficulty finding a doctor to diagnose my symptoms. Finally, they found a Neurologist in Louisville, KY which was 3 hours away from our home.

Being diagnosed at such a young age and being raised with two siblings I didn’t realize I was different until my high school years. My parents never treated me differently than my siblings which I’m very grateful for.

In my high school years I discovered my seizure triggers: Menstrual cycle, stress and lack of sleep. I learned that anytime I had my menstrual cycle that I was more likely to seize due to loss of blood. Precautions were also needed during surgeries. My body was changing causing a need for more medicine. During my monthly cycle I would make sure that I stayed close to home and got plenty of sleep. Seizures prevented me from doing sleepovers with friends, but I still attended the parties. Prior to school exams or my driver test, I studied during the week instead of late night cramming. Knowing my seizures allowed me to complete high school, get my driver’s license, date and hold a part-time job. I encourage you to try everything and listen to your body.

While attending a local college I was still living at home, dating, and working full-time. Prior to these years I never let people into my seizure world. However, I was spending more time away from home and needed to educate friends/employers about my seizures. To my surprise no one treated me differently even if they saw me seize. I found this very rewarding. It took me 3 years to complete a 2-year Associate Degree in Applied Science in Computer Science but I did it. I was the first grandchild on either side to complete college. I was so proud.

Succeeding college, I followed my fiancé to Nashville, TN for employment. This was a first for my family as all family members lived in KY and most in the same county. I was now finding the challenges of housing, employment, financial payments, health benefits but mainly a new Neurologist. Living in a metropolitan area I found a competent doctor who was well versed in epilepsy treatment and treated me with respect. When she changed my medicine, she explained the long term effects of the medication. I was still seizing but having auras and knowing my triggers allowed me to continue my routine. I also married during these years. Our wedding was in KY and living in TN was very challenging. My parents were great during this time and saved me from a lot of worry. Thank you Mom and Dad! I still faced daily challenges but considered my life successful.

My determination to locate a job using my college degree was successful and being newly married I felt like I was on top of the world. The only thing missing was a child. I had been married for five years and still no child. I talked to my Neurologist about having a child. Unfortunately, she advised against childbirth. Pregnancy puts extra stress on the body, and that may cause seizures. If I seized during pregnancy it would cut oxygen off to the child and cause abnormalities. I knew this was true as I had a co-worker/church friend that both had seizures during pregnancy. Seeing my disappointment, she told me epileptics do have children but with my seizure type, I would be put on bed rest. Can you imagine nine months of bed rest? My husband and I decided to adopt instead. This took several years and once we were approved and a child was available, he filed for divorce. This was difficult and I went into a depression that I opted to hide from others. All my life I had obtained my goals in life. Now I can’t have a child and my husband divorces me. I considered myself a failure. I had to face my parents and siblings. To me this was worse than a seizure. I did tell my family and it went better than expected. I stayed in TN for another year and then moved back to my hometown.

My life was changing again. However, I had succeeded once and I was more determined to do it again. When I married again it was to a man I had known for many years and had two children from a previous marriage. These children became everything to me. I saw why God gave me this man. We had our difficult moments in life and there were times I wanted to walk away. We have traveled by car/plane out of state for work and pleasure. He has been with me through a hysterectomy, VNS installation, broken bones, etc. We have been married 25 years and now have two grandchildren.

Through my story you can see I have experienced many challenges in life but with determination and knowing my triggers I have accomplished/experienced many things in life.

Learn more about epilepsy and read more stories at Epilapsey.com.

Looking back, I can see that you have conquered so much on your own. You were diagnosed with epilepsy as an infant and are just now weaning off a medication you began back then. Starting to see a new doctor after almost 25 years who agreed to do this gives you hope!

If you were able do things over, you would have kept on writing your journals. You went through tough times and that helped you, writing always gets your thoughts off your mind. You decide if you share things, but you would now have the chance to review a lot of what you do not remember. Epilepsy causes some memory problems and having those journals would be amazing. When family talks about things you do not recall and you try to go along and stay in the conversation, you would feel much more at ease having these to review prior to family events.

When it comes to friendships and relationships, try hard not to compare yourself with others. Being a twin, this is totally difficult for you and your friends not to do, since all things in life are pretty damn close to your twin’s…same teachers in school, same homework assignments for years, same sports, etc., but you are you!! A twin without Epilepsy is no comparison…

Realize the gumption it took for you to call back the neurosurgeon who you thought was calling to remind you of your upcoming appointment. You got the call you never anticipated when he told you the surgery was cancelled. After about 10 minutes of feeling sorry for yourself you called demanding your timeslot back and the placement of a Vagus Nerve Stimulator to help control your seizures. When you got the call stating that was going to happen you understood you made a good choice, that you were not going to let someone else try to control your seizures. The biggest changes happened several years later when a new neurosurgeon started working with you and your life began down a new, tougher trail, but one worth traveling… That’s when your motto became: Never give up!

Always know that life is full of twists and turns. There will be people that you meet that are going to be life changers. Use your day planner to keep on track with your appointments and keep your head in the game. You have so much to offer those that accept you and your challenges, those that understand that no two people will always agree but can still be friends and family regardless.

Keep your fighting spirit and live a life with no regrets!

Learn more about epilepsy and read more stories at Epilapsey.com.

I was re-diagnosed with epilepsy in 2006. I had a breakthrough seizure when pregnant with my oldest. My partner, at the time, had zero idea of my seizure history. He thought I was faking, and needless to say was scared. Education was extremely rare back then, (and still is, let’s be real) …and I had no idea what the diagnosis meant for me. I also knew zero other people that had seizures.

This is what I wish I knew when I was diagnosed with epilepsy.

1. I am not alone. I had no idea what epilepsy meant. It wasn’t until about 2010 that I met my first friend with epilepsy. At the time, the internet wasn’t huge, and we virtually met on an epilepsy foundation chat forum.

2. It is ok for people to know I have epilepsy. It isn’t as scary as I thought it was, and the more people knew about it, the more UNscary it was. Does that make sense?

3. I will have seizures in public. It is inevitable that I would have a seizure in public. Did I know it was going to be at the airport? No. Did my Dad realize what was happening? Also no. Was I super thankful the man behind me in the security line caught me before I hurt myself in the drop (tonic) stage? YES.

4. I had no idea that Sudden Unexpected Death in Epilepsy People was real. Did I ask if I could die from it? Probably not… but this is something that us with seizures NEED to know. We NEED to know that our risks of SUDEP increase the more seizures we have. I am so fortunate that I am seizure-free, and hope to be in the future too. Some aren’t that fortunate, and doctors should disclose ALL information. With the passing of well-known celebrities, SUDEP and epilepsy, in general, has received a lot more media attention. The community and the public should talk about it more. I am by no means, a medical professional, but I encourage you to mitigate your risks/triggers and talk to your healthcare professional about it.

5. My life isn’t over. I used to feel that seizures would never go away, that I would never be able to drive. Or swim. Or shower alone. I am so thankful that I was seizure-free for 16+ years before being re-diagnosed. I wasn’t able to drive for 6 months after each seizure…but I can drive now. The American Disabilities Act is here to help me. Epilepsy is a disability and needs to be accommodated in the workplace. I am able to have children and be an amazing parent to them.

Learn more about epilepsy and read more stories at Epilapsey.com.