Faces of Epilepsy

We are dedicated to meeting the needs of the 65,000 people across Colorado and Wyoming who live with epilepsy and seizures. Your personal stories can increase awareness, offer comfort and inspire others while reducing the sense of isolation that often comes with epilepsy.

Share your story! Submit your story to info@epilepsycolorado.org.

Brittany Luedeke
Colorado Springs

Personally affected by tonic-clonic seizures

 

I was first diagnosed when I was 13 years old. It was very difficult when I first found out because I didn’t understand why this was happening to me and this wasn’t fair. It was very hard at the beginning, but now more than a decade later, I’ve learned so much about living with epilepsy. I don’t look at it has a bad thing anymore. I look at it as a great thing that I have been able to learn from. I have made so many wonderful friends.

One of the many successes I’ve had is learning about the Jason Fleishman summer camp. I was able to turn my life completely around and I eventually became a counselor at the camp, where I could help children who were scared about having epilepsy just like I was when I was when I was first diagnosed.

I manage my epilepsy by taking medicine twice a day.

I’d tell people who were newly diagnosed not to give up. There is always help. The Foundation has been the biggest help in my life. I am forever grateful for them.

Epilepsy is not always scary, and there are advocates to help you learn about epilepsy. 

Elizabeth Furry, Mother of Brionna

Parker, Colorado

When did you become a caregiver to someone with epilepsy, and what were your thoughts after the diagnosis? Our daughter was first diagnosed at six months old with epilepsy. She was just recently diagnosed with Dravet syndrome and she is now 9 years old.

How did you prepare for life as a caregiver to someone with epilepsy? We just address it head on.

What is the hardest part about being a caregiver to someone with epilepsy? Not being able to fix my child. Not being able to help make it better.

What are some of the highlights and successes you’ve seen as a caregiver to someone with epilepsy? We celebrate the milestones, especially seizure-free days.

What advice do you have for a fellow caregiver to someone with epilepsy? Take each day one at a time. Celebrate the positives. Seek out support groups and others who can relate. But the most important thing of all is to make time for yourself.

Claire Duclos
Broomfield

Personally affected by epilepsy

 

When were you or your family member first diagnosed, and what were your thoughts after the diagnosis?: I was 2 when I was first diagnosed. I was too little to remember those thoughts.

What is the hardest part about having epilepsy?: For me, it is having my independence taken away.

What is one of your greatest successes despite having epilepsy?: I went to college and got an A in college level math.

How do you manage your epilepsy?: With medicine.

What advice do you have for people who are newly diagnosed?: Enjoy life as much as you can.

What do you want others to know about epilepsy?: It can be life threatening

James Anderson
Boulder, CO

When were you first diagnosed, and what were your thoughts after the diagnosis? I was diagnosed when I was 12 years old after having a tonic clonic seizure while on vacation in Tanzania, Africa. Getting the news that I had epilepsy was terrifying because I couldn’t even fully contemplate what that meant for the rest of my life going forward. I felt like a freak.

What is the hardest part about having epilepsy? The hardest part of having epilepsy has been dealing with bad side effects from medications. Some meds made me uncontrollably angry, others made me depressed, and some even gave me other problems that you don’t even want to know. The uncontrollable anger made socializing in school especially difficult because every little thing that wasn’t 100 percent positive, and it made me furious.

What is one of your greatest successes despite having epilepsy? On June 1, 2012 (exactly one week after graduating high school), I had brain surgery. Ever since I had the operation, I’ve been completely seizure free. It’s allowed me to go off to college at Colorado State University and live on my own, away from my parents, without having to worry about having a seizure with no one around to help.

How do you manage your epilepsy? Even though I have been seizure free for years, I still take meds (luckily, ones that don’t have serious side effects) and will likely stay on them for the rest of my life.

Julie Bennett

Lakewood, Colorado

When were you first diagnosed, and what were your thoughts after the diagnosis? I was diagnosed with petite mal epilepsy at the age of 5. I didn’t know I had it until I was a little older and could understand it better, I really didn’t like having epilepsy because I was restricted on what I could do. My mother was overly protective of me because she didn’t want me to get stressed out and have a seizure. Now that I am older and have out grown it I would like to be able to help you and others on the awareness of epilepsy.

What is the hardest part about having epilepsy? Being overly protected.

What is one of your greatest successes despite having epilepsy? Sharing my story with you and outgrowing epilepsy.

What advice do you have for people who are newly diagnosed? Try to be as normal as possible.

What do you want others to know about epilepsy? Don’t be too overly protective of loved ones.

Nick McCumber

Boulder, CO

When were you first diagnosed, and what were your thoughts after the diagnosis? I was diagnosed around age 7. I can’t say I really had any thoughts about it then. I took it as it was and I had a very supportive family. All I knew was that I had to take all of these pills and stay in bed and be quiet.

What is the hardest part about having epilepsy? Accepting it. Sometimes it feels like you don’t really know that you have it. It’s not really something that you can put your finger on. It’ s not like having a cold, where you have sneezes and sniffles. It’s not knowing what you’ve got. It’s hard to pin down. It’s not like you can say, “Well, I’ve got something and I’ll get over it.” You don’t know when you’ll get over it. Epilepsy is just much different.

Accordion Content

Rex Bolding

Englewood, Colorado

Type of epilepsy: As a child I had grand mal seizures, and as adult I now have complex partial seizures

When were you or your family member first diagnosed, and what were your thoughts after the diagnosis? I was first diagnosed with seizures at the age of 2. My thoughts of growing up with seizures initially scared me due my epilepsy being unexplained. Once I learned how to properly manage epilepsy effectively, it put me at ease knowing I was able to manage my seizures in an independent manner.

What is the hardest part about having epilepsy? The hardest part of having epilepsy is often interacting with other individuals on a daily basis. There are times where I get confused in various situations. Often I am unable to gauge in the morning what type day I will have . Sometimes I start off feeling good and I have a sudden mood change, which is out of my control. Also, I am transgender, so I often worry there will be adverse effects with taking my medication and doing my transition.

What is one of your greatest successes despite having epilepsy? My greatest success with having epilepsy is that I became a Engineering and Information Technology intern. In addition, I graduated high school with a 4.0 and became a National Honor Student. I believe I can do anything I put my mind to. Also, I have learned to live independently on my own with help from my parents, which is a great feeling.

How do you manage your epilepsy? I manage my epilepsy by taking my medication, getting plenty of sleep, and utilizing cognitive therapy to understand myself better to help overcome issues within. In addition, on a daily basis I do as much possible to limit my stress, as this is leading cause of my seizures. Furthermore, I make sure I’m eating a balanced diet and keeping myself hydrated.

What advice do you have for people who are newly diagnosed? The advice I would offer to people recently diagnosed would be, don’t allow the disability to disable you. Know you can do anything you put your mind to with perseverance. In addition, educate the people around you so they understand the possible issues which may arise with you having epilepsy. It helps if you have support from friends and family who deal with epilepsy. Often, we don’t see the direct issues which affect us at times.

What do you want others to know about epilepsy? I would like people to know that epilepsy is difficult to deal with at times. Sometimes we slur our speech and are confused about various situations. Furthermore, epilepsy is more than just seizures, as it often has other accompanying conditions associated with it. Oftentimes, poor memory, mood issues, depression and anxiety walk hand in hand with epilepsy.