Epilepsy Through The Eyes of a Caretaker (A Daughters View of Growing Up with a Mom with Epilepsy)

alexis and stacey

If you really knew me you would know my mom has epilepsy, and her having epilepsy has made me the person I am today.

My mom got epilepsy when she was five years old. She got very sick from a virus that traveled into her brain, and she had to be put into a coma to stop her brain from swelling, this leads to scar tissue damage on her brain and gave her epilepsy. The doctors at the hospital told my grandparents that she was supposed to have brain damage, not be able to walk, even told them she may come out of the coma as a paraplegic. So, my mom waking up with none of that except having epilepsy, she was considered extremely lucky.

Growing Up with a mom who has epilepsy

Growing up with a mother with epilepsy was basically a normal childhood, with playing outside with friends, fighting with my brothers, thinking second grade was “hard”.  Although I had to be more mature and understand what was happening to my mom at a young age.

My older brother, Michael, and I had to take on responsibility and be there for her. We had to know what to do when my mom had a seizure and how to help her afterward. My dad usually works until later in the evening,  so if she was to have a seizure during the day it is me or my two brothers home to help.

Seeing a seizure for the first time

The first time I remember seeing my mom have a seizure was when I was six years old. My dad went into the store to pick something up and my brothers, mom an I was waiting in the car. I remember sitting in the car when Anthony starts asking my mom a question but she was not responding.

We all look at each other confused when my mom begins to convulse. My brothers and I are all two years apart so we all were very young at the time. My little brother Anthony wasn’t too scared because he had no understanding of what was really going on.

Watching my mom have seizures will never be something I got used to. It always and always will be a scary thing to see. Simply because I can’t do much to help in the minute or two she is having one. You’re not supposed to touch or try to move a person when they are in this state as it could harm them. The only thing you can do is make sure the person is safe from falling over or hurting themselves.

alexis 7

Advocating for a cure

When my brothers and I got a little older, my mom wanted to get more involved with the Epilepsy Foundation. We started going to yearly Epilepsy walks to raise money for the cause. My whole family would come and support my mom and it made the walks a lot of fun. Going to these walks and seeing all the people who are going through the same thing as my mom was really amazing to see.

My mom has even joined the board on the Epilepsy Foundation, helping with fundraisers, bringing awareness to the cause and setting up the walks at Point Pleasant. Over this past weekend, she has received an award from the Epilepsy foundation for her work with the organization.

Epilepsy strengthens you not weakens you

My mom having epilepsy made me into a very responsible person. I always look out for her and make sure she is feeling okay. I had to be there for her when she didn’t feel good or hurt herself. My mom has broken bones and even had a hematoma in her brain from her seizures. Now, my mom having epilepsy is something that drove her to become an incredibly strong person.

Epilepsy brings obstacles but there’s always a way to make a new path for yourself

My mom used to work at NBC in New York until she had a seizure and they had to fire her because of it. She got her license taken away for many years from epilepsy having to rely on others to go places or not go anywhere at all.

My mom had to grow up with a disorder that can be triggered at any time or happen anywhere, with no control over it. These are just some of the examples of the many challenges she faced. But throughout all her obstacles she never gave up and just kept pushing forward. My mom didn’t let her disorder hold her back or stop her from reaching her goals.

After being let go from NBC, she started writing books and since has written over sixteen published books which are even sold in stores.

One of the first books she wrote included me and my brother in it, it was the book that started her writing journey. It’s called “My Mommy Has Epilepsy,” She wrote this book to help parents with this disorder, who have younger kids understand it and know a little bit about it.

The part of the book I am in is the part where she tells a true story about an experience with having a seizure with us around. I was two years old and Michael was four, the story goes, we were all taking a walk outside with our dog around our development when my mom falls over and has a seizure.

At the time my mom’s epilepsy wasn’t as controlled as it is now so she did not have as much of a warning about when she was gonna go unconscious. Anyway, she falls over and ends up cracking her head open on the concrete and my dog Princess starts barking and her barking brought someone’s attention outside, which saved my mom’s life. They called the ambulance and she ended up being okay. This part wasn’t included in the book but I figured to tell the whole story.

Good things come with patience

Now, once she got her seizures controlled, she got her license back.  She went fifteen years without having one. My mom showed me that you should always keep your head up, and always be positive when life gets you down. It’s the reason I have grown up to be such a positive person myself. My mom taught me you can’t dwell on the bad things in life, but only find a way to make them better.

alexis

Feeling guilty

With my mom having epilepsy there were many times I felt guilty. Guilty for not being there when she had a seizure because there have been many times this has happened when no one was home. Not being able to be there for her to make sure she is in a safe spot, and guilt for not being next to her when she woke up.

Being alone after a seizure must be a scary thing, not knowing what happened or if you hurt, or not being able to remember the little details about your life for a short time. How someone feels after a seizure is scary too, one minute you feel fine but then the next your body is drained, and you feel completely out of it.  There was one time I came home from being at a friends house, no one else was home but me and my mom.

I walked into the kitchen and there was glass all over the floor. I immediately knew what happened, so this wasn’t something shocking. But I go upstairs to my mom’s room first to make sure she didn’t hurt herself badly, I ask her if she remembers anything or if her head hurts or if she remembers where she woke up, to try to piece together how she fell over. My mom luckily wasn’t hurt besides some cuts, but she easily could’ve been badly injured.

Seeing the world with a different pair of eyes

Growing up around my mom having epilepsy made me see other people differently. I am a very understanding person from this. With my mom having this disorder made me see you really don’t know what others are going through until you get to know them.

That everyone has different challenges they deal with in their everyday life. My mom taught me to always be nice to others, seeing her have her days where she’s upset about her disorder shes told me that’s its been just random people who give her a compliment or say something nice to her really change her day.

My mom is the reason I chose to go into nursing in college and pursue it as a career. Growing up taking care of her when she got hurt, helping her when I could inspire me to go down this path.

Made me realize I want to continue to help people when I got older. I want to be that person who is there for others and helps them when they are sick. Being there for my mom my whole life made me become passionate about wanting to help people when I got older.

My mom was able to help people just by writing books, making people not feel so alone and know there is someone out there who understands what they are going through. She has even received letters from people how she has changed their life. My mom inspired me to want to do that for others, make a difference in people’s lives.

My mom’s life is the definition of the saying, “When life gives you lemons, make lemonade.” She took her epilepsy and did great things with it. She never let it stop her from doing the things she wanted, she used her disorder to help people, to inspire people to feel their best and I always will admire my mom for that.

She is definitely someone I would consider my hero. Although her disorder gave her the path to be there for people and make a difference. When talking about my mom’s epilepsy with her she told me it has its pros and cons.

Throughout her whole life, she had many struggles and limitations on her life. Not just physical struggles but also mental, having to accept her disorder was very hard for her. Knowing she was different from the other kids at school or different from her friends wishing she was “normal”. Having seizures in front of people, random or people she knew was very uncomfortable and embarrassing, as it was something she couldn’t control or stop it from happening. She had to learn to overcome these feelings and accept them as it was apart of her life.

alexis and stacey

Accepting that my mom has epilepsy

Having to accept my mom has epilepsy myself was hard, I never would wish my mom was different in any way. Just having to get used to seeing her have seizures was difficult. Also the fear of not knowing when a seizure would occur made me anxious because you never know when someone with epilepsy would have one.

So never knowing when my mom would have a seizure and just living with the fear of basically the unknown was what I would say difficult. When I was younger I used to close my ears and want to shut my eyes but wouldn’t, I knew I needed to make sure she wasn’t going to get hurt.  I had to put my own fears aside to be there for her. The older I got the more used to I got to this but it still is scary to see because you never know what could happen truthfully. Falling the wrong way or depending on where you are could leave her really hurt. If my mom didn’t have epilepsy I would be a different person.

alexis

How my mom’s epilepsy changed me

Her disorder made me a person who is compassionate, humble, grateful, appreciative and sensitive towards others as well. I am so fortunate that I had such a healthy life. Think back on it now, I could not fathom living life as she did, she is so strong. I am very lucky that my mom’s epilepsy is not as severe, there are people with epilepsy who have multiple seizures a day.

People who have to go through that every day and constantly get hurt, my mom’s epilepsy is more controlled so she can go months without having a seizure. I am very appreciative of the doctors my mom has who helped her control the seizures that give her the ability to live her everyday life and do things that if she were having multiple seizures she may not be able to do.

As I became older, I became sensitive towards others growing up seeing people go through things much harder than what my mom has and seeing all the people who have come to the walks and have similar stories made me have more empathy towards others with disorders. I am an extremely caring person, always wanting to be there for others and help them when I can because sometimes just one person can make a huge difference, which I learned from my mom.

I really appreciate the life I have because it could’ve been so different, my mom’s epilepsy made me more of a humble down to earth person, learned to be more appreciative about the things I have in life and the life I am able to live.

Ironically growing up with my mom having epilepsy I feel is the reason I am more laid back.  I say ironically because you would think I would be more nervous about a person from seeing my mom get hurt and have seizures often.

But I learned you can’t worry about the things in life you can’t control. My mom is one of the most amazing people I know and if I grew up without her having epilepsy I may not be the person standing before you.  My mom took the many obstacles standing in her way and did not let them defeat her.

She only grew stronger as a person who went out to make a difference in the epilepsy community. The purpose of this article was to tell my moms story, show people how being determined and motivated can really set you on such a great path.

The experiences that happen in our life create our future, every twist, turn, and a detour has its purpose. How to not let the bad things in life take over and to know things will get better because that is some of the things my mom taught me, and I hope I can grow up to be as strong,  be driven, and inspiring as she is today.

/0 Comments/by

Most Loved Health Blogs of 2017: Meet 2nd Prize Winner Stacey Chillemi

4234-Most_Loved_Blog_Contest_Winners-1296x728-header_2ND

Written by the Healthline Wellness Team

For our Most Loved Health Blogs contest, readers voted for the health bloggers who inspire them to live stronger, healthier lives — and the results are in!

Stacey Chillemi of The Complete Herbal Guide came in second place and wins a prize of $500 to help forward her mission of inspiring others to take a holistic approach to health. Read on to learn more about her!
Back in 2011, Stacey Chillemi experienced what she refers to as a spiritual awakening, and set about reshaping the way she looks at health. Working with an herbalist, she began to take a holistic approach to wellness as well as managing her epilepsy — incorporating yoga, meditation, positive thinking, and an improved diet and lifestyle.Now a published author of more than 20 books, she has appeared as a wellness expert on shows like “The Dr. Oz Show” and attracted an enormous following as the founder of The Complete Herbal Guide. Attracting millions of readers each month, the site is a repository of information on nutrition, holistic wellness, and information on supplements and vitamins.We caught up with Stacey to learn more about her mission and what she loves most about sharing her story.

Q&A with Stacey Chillemi

What would you say is the mission of your website?

The Complete Guide to Natural Healing believes that food, vitamins, supplements, and alternative medicine can be your best medicine. This website will show you the truth about health and wellness, so you can help your family and closest friends get even healthier. You’ll learn exactly what you should do and how to eat to get healthy, exercise to get your leanest, healthiest body, and how to take control of your family’s health using natural remedies as medicine.

What made you want to start sharing your healing journey?

When I saw the traumatic change in my life — all from changing my thoughts and lifestyle — I thought to myself that if I could improve my physical and mental health by making simple lifestyle changes, can you imagine how many millions of people I could help if I was able to share my story and teach others the tools, techniques, and strategies I used to improve my epilepsy and overall, physical and mental health? The lifestyle changes I made can apply to all conditions and illnesses.

Many people reached out to help me when I was struggling with my epilepsy. It was now my duty as a good human being to use my knowledge, health experience, speaking, and writing skills to help others so they can live happy, healthy, and productive lives, too. Everyone deserves to be healthy and happy.

When did you first notice that your posts were really resonating with readers?

It was when I wrote an article teaching others how to cope with illness. I’ll never forget it. I received an email from a woman who told me that she was planning to die by suicide, then she came across my article on how to cope with illness. She said that she applied my tips and followed the regimen I created. Her life turned around.

Not only was she feeling better, physically and mentally, she realized that she had a purpose in life and for the first time she felt positive and motivated to live life to its fullest. It was then that I realized how powerful the words of wisdom could be, and how they could create such a huge impact in someone’s life. It was then that I realized my true purpose in life. I also realized that I was making a difference in other people’s lives and to me, that is the best accomplishment anyone could ever achieve.

On your blog, you’ve said that you’re grateful for having grown up with epilepsy and other life challenges. How did you come to reach this perspective?

Having epilepsy and going through traumatic life-changing obstacles, helped me see life from a different perspective. I can truly say that I don’t think I would have been as compassionate and sensitive to the needs of others if I didn’t go through all the things I did in life. Of course, I wouldn’t want to go through everything I went through again, but it was all the obstacles I endured in life that taught me to live with an open heart filled with love.

I don’t judge and there are no walls barricading my heart. I see no faults in others and I feel for others as they face their own daily battles. How can you criticize others’ imperfections when we carry just as many imperfections ourselves? As soon as you are willing to let go of the ways of the world and create your own path and purpose, you will experience a life filled with health, happiness, and prosperity the way you never felt it before. It has always been my dream and passion to help others get to this point in their lives.

What’s one of your favorite posts on The Complete Herbal Guide, and why?

I may sound a little biased, but my most favorite post is the one I wrote called, Why I Do What I Do — How I Found My Purpose in Life. It’s about my amazing journey in life from childhood until the present. Every time I read it, tears come to my eyes as I am reminded of everything I’ve been through and how I have come so far in life. It re-instills hope into my heart and reminds me why I started this all. I want to show others that if I can do it, so can you.

If there was one thing you would change about the way the world approaches wellness, what would it be?

I would like to see the world become super conscious of the foods they eat and the products they use. So many things claim to be healthy but aren’t. People need to become aware of the ingredients that are in the foods they’re eating. Many of the ingredients in the foods we eat can cause damage to our body and mental health. Even some of the beauty products we use can alter our hormones. I also feel that people don’t realize how important it is to develop healthy sleeping habits and to manage stress. It’s time that people took a moment to view their daily lifestyle and find ways to incorporate simple lifestyle changes that could have a huge impact on their health.

Also, it’s not all about looking like a supermodel, either. True wellness is when you feel good physically and mentally and you are happy at the stage you are in life. If you’re healthy and you can look in a mirror and say, “I feel good and I love myself” — that to me is true wellness.

Follow Stacey’s journey and learn about holistic wellness on The Complete Herbal Guide. You can also connect with Stacey and her team on Twitter and Facebook.

/0 Comments/by

Top 10 Alternative Medicine Bloggers on Twitter – Google Search

altmed11
by 
This list includes the top 10 alternative medicine bloggers on Twitter, ranked by Klout score. Using Cision’s media database, we compiled the list based on Cision’s proprietary research, with results limited to bloggers who dedicate significant coverage to alternative medicine and therapies, excluding bloggers who primarily cover yoga. This list changes over time as Klout scores update in real time. Tied scores are broken by the number of Twitter followers.
  1. Andrew Weil – Dr. Andrew Weil’s Daily Health Tips – 80
  2. Joy McCarthy – Joyous Health Blog – 62
  3. Johanna Björk – Goodlifer – 62
  4. Stacey Chillemi – Stay Healthy and Cure Your Conditions Naturally – 59
  5. Eric Grey – Deepest Health – 51
  6. Kristi Shmyr – Prana Holistic Blog – 49
  7. Cathy Wong – Alternative Medicine Blog – 47
  8. Renee Canada – Hartford Healthy Living Examiner – 46
  9. Dee Braun – Natural Holistic Health Blog – 40
  10. Geo Espinosa – Dr. Geo’s Natural Health Blog – 33

About Cision Staff

Cision’s research staff makes over 20,000 media updates to Cision’s Media Database each day! For more updates and other thought leaders in the industry, follow @Media_Moves.
/0 Comments/by

Lauren Laurino (Aka Dr. Ren) & Stacey Chillemi Launches Their New Show Holistic Housewives

Lauren Laurino (Aka Dr. Ren) & Stacey Chillemi Launches Their New Show Holistic Housewives

For this Series Kick-off in December, The Holistic Housewives will launch with a special exclusive introduction of the show and an hour you will never forget.  Lauren Laurino and Stacey Chillemi will discuss on “Episode 1- who are we / spouses/children / our why / how we got together.

Our goal is to produce content on how to create and maintain a healthy home aka “sustainable household.”

Read more
/0 Comments/by

An Easy Gratitude Practice

gratitude

Do you have a gratitude practice?

People who practice gratitude experience fewer aches and pains and they report feeling healthier than other people, according to an analysis published in Personality and Individual Differences.

I’m one of those people who’s always liked the idea of having a gratitude practice.  You know, a time each day when you pause to consider things for which you are most grateful. I would typically set aside a few moments before I fell asleep to acknowledge something from my day that really stood out.

Getting Stuck and Unstuck

At first, it was easy to think of things, but then, after running through of all of the “usual suspects”, I would get stuck. How could I make this a practice that was continuously authentic and meaningful and not just another to-do on the list?

Don’t get me wrong, I am immensely blessed. But, each night, the list of things that popped into my head became a bit automatic and predictable. And, although I am very grateful for my wonderful husband and my amazing son, our health and our home, after a couple of rounds, these thoughts no longer resonated deeply enough to evoke feelings of gratitude I desired.  I needed a new approach.  One that would capture the small things as well as the large. And one that would remind me of all of the things I’ve created in my life, the good, the great and the improvement. After all, it’s the combination of all of our experiences that make life rich.

The Method

I knew I needed a method that was quick and easy because when my head hits the pillow, I want to sleep!  So, I’ve started to practice a Stream-of-Consciousness Gratitude. I simply choose one event from my day, or one item near me and let the gratitude begin unfolding.

Last night went something like this:  I am grateful for the long hot bath I took before bed, for the amazing essential oils that made it feel and smell so good, for my Ayurveda guide who taught me to use the oils, for the (sometimes frustrating) remodeling project that created my spa bathroom, for the weekend in LBI, with my husband that inspired the whole project. I’m grateful for learning to appreciate the moments, a lesson it took me some time to really get.  I’m grateful for all of the lessons the universe sends, even the tough ones that it sends over and over until I finally catch on.

Other times, I start with an object.  The book I’m reading, the journal on my nightstand or the art on our bedroom walls.  All inspire gratitude for the memories they evoke, the pleasure in choosing them and the trail down which those memories lead.

The Practice: Keep it Simple

One of the biggest obstacles to adopting any new practice is making it seem more difficult or time-consuming than it really is. So start here, right now, in less than one minute.  Look at your desk, your tabletop or even your screen, find one item for which you are grateful. Think about where you acquired it, who you were with, or how it makes you feel when you use it.  Congratulations! You’ve got the process down and now like any practice, it just takes…well, practice.

Sending my best wishes and gratitude…

/0 Comments/by

World’s leading Natural Healing Site Has Entered a Joint Venture with Joe Dunne, Owner of the Natural Awakenings of Central NJ Magazine

World’s leading Natural Healing Site Has Entered a Joint Venture with Joe Dunne, Owner of the Natural Awakenings of Central NJ Magazine

The world’s leading Natural Healing Site(thecompleteherbalguide.com) with significant footprints in alternative medicine, fitness, beauty, vitamins, supplements, and food for medicine has entered a joint venture with Joe Dunne, publisher, and owner of the Natural Awakenings of Central NJ Magazine (naturalawakeningscnj.com). The announcement was made at Wellness Gala at the Balance Your Life Event.

The Complete Herbal Guide is one of a handful of leading experts with the ability to help people with their health and well-being naturally. In partnership with Joe Dunne, owner of the Natural Awakenings of Central NJ Magazine, they will open new doors providing unique ways to help others how to eat to get healthy, exercise to get their leanest, healthiest body and how to take control of their family’s health, using natural remedies as medicine.

The Complete Herbal Guide and Natural Awakenings will take the alternative medicine industry to the next level. We will empower readers and bring unique product lines that will help improve their health and wellbeing. We will collaborative articles, research and products that will provide readers the knowledge about the natural healing so readers will fully understand, and no longer be confused on the right way to care for themselves and their families. Furthermore, we are all about improving people’s lives, ensuring safety and quality assurance.

“We believe in doing the thing. We look forward to our partnership in leading the evolution of natural healing worldwide,” said Stacey Chillemi, CEO of The Complete Herbal Guide.

“Joe Dunne, publisher, and owner of the Natural Awakenings of Central NJ Magazine is excited by its partnership with The Complete Herbal Guide because it gives us an advantage over everyone else in the industry. The Complete Herbal Guide is the leading resource for natural healing in the United States, setting the standards for the industry. We see the partnership with The Complete Herbal Guide and Natural Awakenings as an enormous gateway to which we can turn into commercialized global products set at US standards.”

About Stacey Chillemi founder of The Complete Herbal Guide (thecompleteherbalguide.com)

Stacey Chillemi is a popular and recognizable health and lifestyle reporter and expert, columnist and health host. Author of The Complete Guide to Natural Healing: A Natural Approach to Healing the Body and Maintaining Optimal Health Using Herbal Supplements, Vitamins, Minerals, Fruits, Vegetables and Alternative Medicine and Natural Remedies for Common Conditions: How to Prevent, Heal and Maintain Optimum Health Using Alternative Medicine, Herbals, Vitamins, and Food, along with 20 other published books, Stacey is the founder of The Complete Herbal Guide (thecompleteherbleguide.com), which currently has over 300,000 monthly visitors. Stacey has been a guest on numerous lifestyle and health-related TV and radio programs, and is a recognized health and natural remedies expert, with over 20 years in practice as a Health Coach. Stacey has been a guest on the Dr. Oz Show, local news, and numerous radio shows.

About Joe Dunne, publisher, and owner of the Natural Awakenings of Central NJ Magazine (naturalawakeningscnj.com)

Natural Awakenings is your guide to a healthier, more balanced life. In each issue, readers find cutting-edge information on natural health, nutrition, fitness, personal growth, green living, creative expression and the products and services that support a healthy lifestyle.

/0 Comments/by

STACEY CHILLEMI of Colts Neck Knows How Defeating Epilepsy Can Seem

newspaper article colts neck

By WYATT OLSON/HEALTH WRITER OF THE ASBURY PARK PRESS

After studying advertising and marketing at Richard Stockton College near Atlantic City, the then 23-year-old began work with a television station in Manhattan, hoping to break into the field.

But the stress aggravated her lifelong condition of epilepsy, she said, and on two occasions she collapsed on city streets with seizures – once amid busy traffic.

“When I woke up, there was one cop directing traffic around me and the other was kneeling over me, trying to help,” said Chillemi, 28, during an interview at her home.

“After that, I stopped working in the city,” she said. “I realized that I couldn’t deal with the stress, I guess. I didn’t want to put my life in jeopardy.”

Chillemi‘s experiences led her to study the lives of others who have shared her disorder. She has completed a book manuscript with dozens of letters from people with epilepsy sharing stories of coping with the isolation, depression and low self-esteem that commonly accompany the disorder. The key to overcoming that, she said, is acknowledging limitations on the one hand, then discovering new avenues of personal and professional growth.

An estimated 125,000 New Jersey residents have epilepsy, said Eric Joice, executive director of the Epilepsy Foundation of New Jersey.

Chillemi moved on with her life after her Manhattan experience to a computer programming job in Monmouth County. Eventually, she married her college sweetheart, Michael, and they had a son, Michael III in 1998.  She also began a quest to come to terms with her epilepsy.

In 1995, Chillemi submitted a letter to the magazine Epilepsy USA, published by the Epilepsy Foundation of America, soliciting stories about how others coped.

“I was surprised when I got hundreds of letters back from people all over America and Canada,” she said. “A lot brought tears to my eyes.

“That’s when my life really took a turnaround because I realized there are so many individuals out there feeling the way I did. … I realized that I’m not the only one who feels alone, rejected, limited and angry at times.”

One man wrote that he had a seizure and fell beneath a bus at its stop. The driver didn’t notice the man and drove away, catching the man’s jacket and dragging him down the street.

A 25-year-old mother of two wrote about the first time her toddler son had a seizure. She noticed that the boy’s eyes had rolled back in his head, and when she picked him up he was limp and not breathing – typical symptoms of a seizure but terrifying for the uninitiated. The mother eventually got the boy’s seizures under control through a special diet.

Other letter writers said they had 60 to 120 small seizures a day some had experienced mild brain damage as a result because of the continual oxygen deprivation.

Feeling different

Epilepsy actually is not a disease, but a term describing recurring seizures. They can be caused by many different neurological disorders brought on by trauma, disease or genetic defects. During a seizure, part or all of the brain is consumed by abnormal electrical discharges, like a sudden electrical storm. About 2.3 million Americans have been diagnosed with epilepsy, according to the Epilepsy Foundation.

In about half the cases of epilepsy, the cause of seizures cannot be identified, said Dr. David Mandelbaum, director of the division of child neurology at UMDNJ-Robert Wood Johnson Medical School. He estimates that genetic defects are responsible for a sizable portion of these cases. Researchers are working to identify them. The task is huge, given that about half of all human genes are involved to some degree with brain development.

Chillemi, who grew up on Long Island, was 5 years old when she contracted encephalitis, a viral infection that caused her brain to swell. Though she overcame the virus, the infection left scar tissue in her brain that manifested itself in seizures.

She said her mother heard gurgling noises from Chillemi‘s room and found her in the midst of a major seizure. The frequency of seizures increased when she reached puberty.

“As a child, I was restrained from doing a lot of things,” she said. “I didn’t want to be different from anybody else, and I didn’t see why I had to be different.

“I wouldn’t be allowed to play certain things in the gym, like basketball or any contact sport with a ball where you could get hurt. I was very angry, and as I got older I started feeling ashamed that I had epilepsy.”

When she reached high school, Chillemi said she was determined to keep her epilepsy a secret. The seizures she had then were often less intense, leaving her dazed and looking as though she were having a daydream.

During more serious seizures, her eyes would roll back, her teeth chattered and she would lose consciousness briefly. When she revived, she was confused and would remain fatigued through part of the day.

“At times, I felt alone,” she said. “After seizures, I would cry. It’s something you have no control over and that makes you very angry. Your body tells you when you’re going to have a seizure and you can’t do anything about it.”

Chillemi said her seizures begin with a tingle in the foot, then a feeling of electrical power moving up her body, which is called an aura. An aura is the earliest stage of brain irritation from the seizure’s electrical discharge. Some people feel a change in body temperature or anxiety. For others, the aura might be a musical sound, unfamiliar taste or a strong odor.

Many people with epilepsy control their seizures fully or partially with drugs. Two years ago, Chillemi said she discovered an anticonvulsant medication that controls her seizures. Now, she has them only during sleep, although they are accompanied by a recurring dream of suffocation.

Questions about state law

Chillemi said she is content with her life as a stay-at-home mom and fledgling book author. She is negotiating with several publishers who have expressed interest in the book, whose working title is “Epilepsy: You’re Not Alone.”

Like most people with epilepsy, she does not drive – a restriction that adds to a sense of isolation for her and others.

“In a state like New Jersey, if you can’t drive, you’ve got a big problem,” said Joice of the Epilepsy Foundation.  Joice said New Jerseyans with epilepsy is hampered by an “onerous” state driving law, Driving restrictions are one of the reasons that national studies have found people with epilepsy are more likely to be unemployed or underemployed than the general population, he said.

A New Jersey statute dating to the 1920s requires doctors to report patients who have seizures to the Department of Motor Vehicles. A review board then decides whether a driver’s license should be suspended, Joice said. If it’s suspended, the person must be free of seizures for 12 months to qualify for reinstatement, a process that can take months, he said.

New Jersey is one of six states that require mandatory reporting by doctors, said Joice, who calls the law “regressive.” He said that mandatory reporting chills the relationship between doctor and patient. To skirt that law, many patients seek care in Pennsylvania or New York, where reporting is not required, Joice said.

The Epilepsy Foundation of America advocates driving laws similar to the approach taken by Wisconsin, which works on a case-by-case basis. Wisconsin licenses people who have been seizure free for three months provided a doctor has submitted a statement in regard to the condition. Additional reports must be filed every six months for people who have been seizure free for less than two years. Maryland has a similar system.

John Dourgarian, a spokesman for the New Jersey Department of Transportation, said the department consults with an epilepsy self-help group associated with the Robert Wood Johnson Hospital in New Brunswick.

“I think we try to be as sensitive as we can to this matter,” he said. “We don’t want to have anyone who’s subject to a seizure driving a vehicle. At the same time, if a person has, through medication or in some way gotten past the seizure problem, then they can be authorized to drive again. That’s something we work on with their doctor.”

Joice said that statistics in Wisconsin and Maryland show no increase in accidents due to drivers’ seizures since changes were implemented in the early 1990s. He advocates that New Jersey follow suit.

“We would be the last organization that would want to put people at risk,” Joice said. He expects legislation will be introduced in Trenton this year to alter the existing driving provisions.

Dourgarian, however, said he was not aware of any proposed legislation.

/0 Comments/by