Amparo: A Physician in Mexico with Epilepsy

Although she lives hundreds of miles away, listening to Amparo’s story was like looking in a mirror.   As a 29 year-old physician in Mexico City, Mexico, Amparo is also learning how to live with her epilepsy while balancing a family and a career.  Amparo was diagnosed with left temporal lobe epilepsy at age 19 but began having seizures years earlier, before she understood what a seizure was.

At the age of 14, shortly after Amparo started secundaria school (similar to American high school), she began having bizzare events where she suddenly lost consciousness for short periods of time.

“I would be in class and suddenly fall asleep or black out,” she remembers.  “When it was time to go to another class, my friend would wake me up and I would begin again.”  Although she had persistent and recurrent episodes throughout secundaria school, Amparo avoided giving too much thought to her sudden and repeated lapses in awareness.

After Amparo completed high school, she chose her career path and began medical school, as is standard practice for those who study medicine in Mexico.  As a 19 year-old medical student, she was required to attend classes that began at 7 each morning and continued until 3 PM each afternoon.  After a short break, classes would begin again at 4 PM and continue until 8 at night.  Amparo found the rigorous class schedule taxing on both her mind and her health.  During the second semester of medical school, Amparo’s professor asked her a question and she was unable to speak or respond.  The professor encouraged her to schedule an appointment with a neurologist for evaluation of possible seizures.

The neurologist who met with Amparo “asked a lot of questions” and helped identify an event where she sustained significant head trauma as a young child which may have been the inciting incident for her seizures.  An EEG confirmed complex partial epilepsy with secondary generalization.  Amparo was started on the anti epileptic medication levetiracetam but she did not experience any improvement in her symptoms.  In the months that followed, she tried primidone, which made her feel persistently drunk, carbamazepine, topiramate, and valproic acid.

Despite her recent diagnosis of epilepsy and frustrations with medication trials and failures, Amparo did her best to continue in medical school and perform at the level of her classmates.  She excused herself from class when she experienced a seizure but then returned to her work promptly.  She became discouraged, however, when one of her professors quietly urged Amparo to reconsider her decision to be in medical school.  “Because of your illness, you won’t be able to finish medical school and become a doctor,” her teacher warned.

Amparo confided in her perpetually supportive mother.  “Mom, they tell me I’m not able,” she complained, considering what her other career options may be.

Amparo’s mother provided the strong and unweilding voice that she needed.  “Amparo, you’re here.  You’ve already made it to medical school.  You must stay and get your degree.” Amparo also was reassured by the strong support of her younger sister, who assumed the role of eldest child when Amparo had a seizure, and her father, who worked many hours to pay for treatment of Amparo’s epilepsy.

A short time later, Amparo informed her doubting professor and other medical school faculty members that she wouldn’t leave school before her graduation.  They would learn never to question her abilities again.

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Despite her commitment to continuing her studies, Amparo still suffered from persistent seizures.  Eventually, she had to drop some classes in the academically rigorous fourth year.  During her 5th year of medical school (which is similar to Internship in the U.S.), Amparo was expected to work in the hospital for long hours every day.  Her teachers and mentors and spoke with her and elected to take a year off to focus on achieving seizure control.  During this time, she took the classes that she had to discontinue the previous year and tried her hardest to rest and recover.

Although Amparo fared relatively well during her year away from medical training, her seizures returned almost immediately when she returned to school.  Early in the academic year, she suffered a prolonged seizure, or status epilepticus.  In the weeks that followed, Amparo visited her neurologist and was told that epilepsy surgery her best option.  A MRI confirmed a seizure focus deep in her left temporal lobe.   During the pre-surgical testing, Amparo was warned that she may have difficulty remembering names or words to describe objects after her epilepsy surgery.

Amparo had a left temporal lobectomy in March 2009.  Even though she felt great pain as she woke up from anesthesia, she also was enormously relieved to immediately recognize her physician.  As she recovered, she worked with a neuropsychologist to help regain her speech and language capabilities.   Amparo enjoyed two years free from seizures after her surgery.  She completed medical school and began to consider what type of medicine she wished to practice.

Lobectomy

Scar over left temporal lobe after surgery

My sis and me after my surgery

Amparo and her sister after surgery




After two years of seizure-freedom, Amparo talked to her neurologist about discontinuing her anti-epileptic medications.  With his approval, she began a slow wean off her medications with excitement.  But as she weaned to half of her previous dose of medications, Amparo’s epilepsy returned.  She sustained another prolonged episode of status epilepticus and was admitted to the Intensive Care Unit in a medically-induced coma.  Amparo had another prolonged seizure in the days that followed and remained in the hospital for one month.  She reports that she walked the brink between life and death during that hospitalization.  “It was awful.”

Amparo was started back on anti epileptic medications and now suffers approximately one complex partial seizure every two or three months despite her three daily medications.  Because her partial seizures sometimes lead to generalized tonic-clonic seizures, she has sustained a variety of injuries over the years.  She has broken her finger, lacerated her eyebrow, cut her lip, and injured her elbow.  The visible and invisible scars left from injuries related to seizures have affected Amparo deeply.

“Sometimes when I look in the mirror, my reflection causes pain in my heart.  It just doesn’t seem fair.”

However, despite her trials, Amparo continues to maintain a healthy sense of perspective.  “There are always people who have it worse than I do,” she said.  “Others with epilepsy don’t have the opportunity to have the career that I have, or even the family that I enjoy.  I have a problem but I also have lots of opportunity.”

Still, Amparo states that fear of when the “next seizure” constantly haunts her.  “I count each day from a seizure.  My family watches me closely the day of a seizure but as time progresses they back off.  But I am always wondering when the next one will come.”

Amparo also acknowledges that the public perception of epilepsy in Mexico and worldwide is still significantly different than the truth.

“People with epilepsy in Mexico talk less about their disease because it’s better if others don’t know if they have it.  They think that if they don’t talk about it, they will be less affected.

“People in Mexico think that seizures occur because epileptics have some kind of venom. Patients are tied to their desks because they have epilepsy. We have to make a change here. It’s difficult, but we have to do it.

“I feel like I have the responsibility to help make epilepsy acceptable,” she said with determination. In effort to educate others about epilepsy and its associated stigma, Amparo is currently completing her Masters Degree in Bioethics. The title of her thesis is “Discrimination that Suffer Mexican Persons Who Have Epilepsy in the Field of Work.” She chose this theme because she knows what it’s like to feel discrimination, but she also wants to teach others to rise above their seizures and work toward their academic and professional goals.

“I still have problem remembering names of people I have just met and sometime of people I have known for years,” she said. “But even though I have epilepsy, I had had surgery, I have won a wonderful life full of important friends and family that help me, and I have learned that we are always capable of new things.”

Please pass it on.

Art

Artwork that Amparo created after epilepsy surgery

 

 

Family

Amparo, her sister, and parents

 

 

 

Meg: An RN with Epilepsy

When the neurosurgeon who performed Meg’s left temporal lobectomy was asked to describe what he saw at the start of her epilepsy surgery, he paused and explained through a undulating blue mask, “I’m looking at a bunch of yellow, contused brain slapped up against the skull that is a remnant from Meg’s previous injury.”

The surgeon’s exact description of Meg’s brain is easy to remember because portions of her surgery are available on tape and were visible for all of the Omaha metropolitan area to see.  Over the whir of a bone cutter and the staccato beep of a heart rate monitor, you can also hear the hushed buzz of the operating room staff working as the neurosurgeon comments on the findings in Meg’s injured brain.  Prior to surgery, Meg made the courageous decision to allow a local television station in Omaha, Nebraska tape portions of her pre-surgical evaluation and then parts of her epilepsy surgery to help raise awareness and inform others about epilepsy.  Even though she’s not awake, if you look closely during the video of the surgery, you can see a wisp of Meg’s dark brown hair peeking out bravely at the nape of her neck, as if her ebullient and bright personality could not be sequestered even in the confines of the most sterile and grave settings.

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Meg’s story began in the spring of her freshman year of high school, when she felt like she hadn’t a care in the world.  She was playing on the high school basketball team, had a great group of girlfriends, and had everything she hoped for.  Then one March afternoon, everything changed.  When an older girlfriend drove Meg and a group of friends home from school, the car collided with a tree on Meg’s side of the vehicle.  When Meg was being evaluated in the Emergency Room immediately after the car accident, she suffered a generalized tonic clonic seizure — the first of many to come.

Meg remained in a coma and on life-support for a week following her car accident.  When she finally awoke and studied her face in the mirror, all she noticed that was drastically different was big brown pieces of hair standing up at an odd angle on the left side of her head.  Meg’s mother gently explained that the physicians that treated her in the emergency department had to shave the left side of her head to monitor her intracranial pressure.  Meg was relieved that after a serious accident, all that had changed was her hair.  She didn’t know what was brewing inside.

Meg’s hospitalization after the car accident and traumatic brain injury was followed by a longer stay at a local rehabilitation center where she concentrated on physical therapy, occupational therapy, and speech therapy.  Because Meg’s brain injury was in her left temporal lobe, she had particular difficulty with short term memory and speech.  Meg states that ever since her accident, she’s had difficulty finding the right words during conversations and naming objects that used to seem commonplace.

Despite her major accident and injury, Meg returned to high school with her class in the fall of her sophomore year after a period of rehabilitation with determination and confidence.  Meg wasn’t able to participate in her beloved basketball any more — the risk of further concussions or closed head injuries was too great — but she was pleased to be back amongst her peers.  As a result of her injury, Meg required extra time on her tests at school and some extra accommodations for learning, but she did well in her courses and achieved her dream of acceptance into a nursing school when she graduated from high school.

And because epilepsy is never predictable and tends to strike at the most inopportune times, Meg had her first complex partial seizure when she was standing in front of a class of nursing students giving a presentation about a pediatric nursing topic.

Meg wrote about her first complex partial seizure on the website http://www.myepilepsystory.org:  “. . .all of a sudden, out of nowhere, my heart began to race—not out of nervousness, but more like I was running from a train and couldn’t get away. I kept trying to swallow, but my mouth was too dry. I had prepared for this presentation, but the words I was planning to use just weren’t coming out.

“I tried to take some deep breaths to relieve what I thought was nerves, but I couldn’t even gather the breaths. The scariest part was knowing how important it was to make eye contact with the entire audience during a presentation, but for 15 seconds I felt paralyzed and blankly stared, unable to look away from one side of the room. After what seemed like forever, I regained my composure and was able to finish the last minute or so of my presentation”

When the event was over, Meg was able to complete her presentation.  A nursing instructor who saw the event, however, approached Meg later and suggested that she see a neurologist.  Soon Meg was started on her first antiepileptic drug which eventually led to another, and another, and then a different one.  Meg tried a total of four anti epileptic drugs at their maximum doses prior to her decision to have surgery.  As her stress at school increased, her seizure frequency increased as well.  Though Meg was passionate about becoming an RN, she had to slow down in the pace of her studies because the medications to treat her seizures were affecting her memory and concentration.  With hard work, true grit, and true devotion to her chosen profession, Meg graduated as an RN one year behind the class that she started with, yet lightyears ahead of the grips of epilepsy.

After graduating from nursing school, Meg worked as a pediatric nurse in an outpatient clinic and then as a school nurse in an elementary school.  Though she loved interacting with children, Meg eventually moved from areas of direct patient care to phone triage because of her worsening breakthrough seizures.

Several years after graduating from nursing school, Meg became pregnant.  Despite taking escalating doses of antiepileptic drugs during her pregnancy, she delivered a perfect baby boy, who is now three years old.   The significant hormonal changes that characterized the period after Meg’s pregnancy caused Meg’s epilepsy to spin out of control.  Her seizure frequency increased, several more medications were unsuccessful and she was determined to be a candidate for a left temporal lobectomy.  When the local news approached Meg and asked if she would be willing to participate in a series of feature news stories following her through the surgical experience, she agreed.  Although she was nervous to allow cameras and the public to view her at her most vulnerable, she thought it was an important way to tell part of the real story of epilepsy to the general public.

Meg in the hospital prior to her epilepsy surgery

Meg in the hospital prior to her epilepsy surgery

Meg’s surgery has proven successful.  She will celebrate the two year anniversary of freedom from seizures this April.  Meg still takes high doses of three antiepileptic medications but the constant dizziness that she assumed was a medication side-effect prior to surgery is gone.  Meg is now also working as a nurse case manager for at-risk mothers in the Omaha area to teach infant care and help with the newborn transition.

In addition to doing her part to raise awareness about epilepsy, Meg hopes to help others that are experiencing seizures cope with their illness.  To do this, she started Camp YouCan, a summer camp for children with epilepsy in Nebraska.  Camp YouCan is a day camp where kids with epilepsy can come together to play and learn about how to cope with their illness.  Meg was able to coordinate donations from local organizations and businesses so that 24 children could attend last year and she is planning for a bigger camp with an overnight event this summer.

From a fateful afternoon car ride to a news story that touches thousands and a camp that can impact a child’s life forever, Meg has turned her tragedy into a multitude of triumphs.  The links to videos of Meg’s epilepsy surgery are attached below  — you may want to grab a kleenex.

Please pass it on.

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Meg with her parents

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Meg and her husband

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Meg gives a “thumbs up” while wired for an EEG

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Meg at Camp YouCan, a camp she founded to help children with epilepsy

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Carrie and the Gift of Perspective

If you believed the stereotypes, Carrie would be far from what you would expect in a typical patient with epilepsy. She is a successful professional who works as an associate director of an internship program at DePaul University, a mother of a happy, healthy little girl, an activist who volunteers with political campaigns, and still someone who lives with intractable seizures.

“When I tell people I have epilepsy, it feels like they are seeing another side of me.”

But through Carrie’s successes, achievements, and major milestones met, the “side” of her that has been occupied by epilepsy remains ever-present.

Carrie’s seizures started when she was 11 years old. First they appeared as what her parents described as “staring spells” combined with an odd nervous sensation that led to a sense of drowsiness.  Concerned that she was having fits of anxiety, her parents brought her to a psychiatrist for evaluation.  After determining this was not simply a case of anxiety, eventually an EEG was performed and she was diagnosed with a “seizure disorder.”   Carrie was started on the first of a long series of antiepileptic medications to treat her seizures and within a couple of years, received the official diagnosis of epilepsy and told by various doctors “you might just grow out of this”.

Over the next 25 years, Carrie tried over ten antiepilepsy medications, all with a different kaliedescope of side-effects and temporary successes.  Although her seizures are so mild that no one can tell she’s having one except herself, when she was 25 years old, she had her first grand mal seizure and it seemed as if her whole life changed.  Carrie realized that her grand mal seizure occurred after a period of high stress and little sleep.

“After that point and until this day” Carrie said, “I never compromise on sleep.  When my daughter was born, my husband did all the night time feedings.  If I can’t fall asleep at night, I have to sleep later in the morning to make sure that I’ve slept a full 6 hours.”

“I know that if I were to have a grand mal seizure because I was sleep deprived and it was something I could have prevented, it would be devastating.”

When Carrie was 29 years old, she had a temporal lobectomy and dreamed that she would one day be free of medication and be free of seizures.  Several years after the surgery, she is on the same amount of medication that she was taking prior to the surgery, but the number of simple partial seizures she was having dramatically decreased from 10-12 each month to just  3 – 5 each year.  Carrie feels like this is some degree of success, even if it isn’t the ultimate goal of seizure freedom.  In the end, Carrie’s walk with epilepsy has given her a very positive perspective on life in general.

“Epilepsy has given me a stronger appreciation of life and has made me feel more empathetic for people with worse diseases.  When I find out that someone has something like multiple sclerosis, I know that it affects their entire life and their entire family just as epilepsy has affected mine.  My epilepsy could be a lot worse.  It’s not like I’m dealing with cancer.  I think I have a more grateful attitude as a result of managing this disease and the risks it presents.”

Carrie states that her experiences with seizures have also given her tremendous appreciation and gratitude for the health and happiness of her 3 and a half year-old daughter, Norah.  Although Carrie had to stay on her seizure medication throughout the pregnancy to reduce the risk of having a seizure and potentially harming the baby, Norah is active, intelligent, and perfect.  Norah has had three complex febrile seizures associated with high fevers and viral illnesses in her first few years, putting Carrie on “high alert” to watch her daughter for more seizures any time she is ill.  With her history and the recurrent febrile seizures, Carrie knows that her daughter is at increased risk of developing epilepsy in the future, but she prays that the stars will align on her side this time.

Perhaps most apparent and above all, epilepsy has bred resilience and strength in Carrie beyond all else.  When I asked her what message she’d like to convey to others touched by seizures, Carrie said, “Epilepsy is part of me, but not all of who I am.  I’m not going to let this stop me from doing what I want to do.”

When I hung up the phone after talking with Carrie, I realized that short of freedom from seizures, Carrie found what we all hope for.  The ability to own a disease that has potential to overtake us is invaluable.  Carrie’s positivity, gratitude, perspective, and fortitude were some of the keys to her success.

Again I remembered that the more we talk, the more we understand.

Please pass it on.

Norah and Carriie483498_10200210628094853_1712029223_a

Lisa

Lisa sits across from me in a crowded coffee shop and speaks in a combination of hushed and muted tones as she recounts her story of living with epilepsy.  Her bright blue eyes are rimmed with emerald specks of green, the brightness of which belies the hordes of medication I know she takes every day.  There’s a single man sitting close by, laptop open, who seems to study us in a pirate-like one-eyed stare when Lisa mentions “grand mal seizure” or “brain surgery.”  He seems to be searching for the image he would expect to accompany those words — instead of two thirtysomething women on a Sunday evening.

Lisa’s epilepsy story began in 1977 in the idyllic village of Wonewoc, Wisconsin, population 834, set in the unglaciated region of northwestern Wisconsin 30 minutes west of Wisconsin Dells on State Hwy 33.  Lisa’s first seizure began when she had a high fever and a viral illness as a small toddler.  Her parents tried desperately to cool their quaking child by struggling to put cool washcloths on her while her limbs twitched and placed her in a cool bath as the seizure continued.  Because the local hospital was not equipped to care for critically ill children, a still-seizing Lisa was transported via ambulance over country roads to Madison to seek medical care.  By the time her seizure abated, she had a temporary right sided paralysis and a permanent change deep in her brain that would last a lifetime.

Lisa doesn’t remember her first seizure, but she remembers receiving anti-epileptic medication in sugar-sweetened water every day until she was five.  She recognizes the fear in her parent’s faces as they recount the story of her first febrile seizure.  And she can remember stark details of the day when her seizures came back.

UW – LaCrosse seemed like the perfect place for Lisa to go to college.  It was a well-renowned university, a reasonable distance from home, and had a fantastic art program, which was Lisa’s chosen major.  Early in her college career, Lisa remembers waking up, almost in a trance, as EMTs and her boyfriend were talking to her. She had heard a sudden crack which she later realized this was the sound of her head hitting the bed frame as she succumbed to a grand mal seizure. Later that same day in the hospital, she had a hard time recognizing her first visitor, her mother, but as her memory returned she also began to understand that the unusual “episodes” that she’d been having throughout her childhood and early adulthood were actually complex partial seizures.

Even as Lisa’s health history was starting to make sense, her seizures were spiraling out of control.  Not too long after her first seizure, Lisa had a grand mal seizure in her residence hall at college.  Unaware of her seizure history and uneducated about epilepsy, the residence hall personnel assumed that Lisa had used drugs.  Lisa was strapped to a metal chair and “questioned” in her unconscious state until her friend found her, rescued her, and brought her to medical care.

Shortly after her seizures returned, Lisa was re-started on anti-epileptic medication.  Although she had improving control of seizures, she noticed extreme fatigue and significant difficulty focusing on her school work.  Her art work suffered enough that she had to change majors.  Lisa became a graphic design major at UW-Stout and hoped that starting over at a new campus may give her a reprieve from epilepsy as well.

Lisa continued to have a combination of complex partial and intermittent grand mal seizures.  She has tried a variety of medication combinations, each with their own list of side effects and benefits.  In 2010, she had surgery to remove the portion of her left temporal lobe that was the focus of her seizures.  In Lisa’s words, “I haven’t had any big seizures since the surgery, but I have a ton more auras so I’m on more medication than before.  I don’t know which is worse.”

Despite her obstacles, Lisa is now working successfully part-time as a graphic design artist and has learned how to predict the patterns when her seizures are most likely to appear.  She has learned how to live with epilepsy, but still feels the stigma from coworkers, employers, and friends who don’t understand the disease.  Lisa recounts a time when she had a seizure in on the way to a choir concert while she and other choir members were crowded into a taxi.  After she woke up in the hospital from her grand mal seizure, none of the choir members treated her the same again.

Lisa is excited to join our efforts to raise awareness and decrease the stigma associated with epilepsy. Even our friend in the coffee shop was searching to understand how his misconceptions could align with the normal-appearing women sitting 2 feet from his table.  The more we talk, the more we understand.  Please pass it on.

 

 

My Story

My son’s birthday.

Christmas Day.

My tenth anniversary.

The Fourth of July.

Last Wednesday.

Today.

These are some of the recent days in my life that have been interrupted by seizures.

In many ways, the story of my Epilepsy is a story of disguise.

Different people can get Epilepsy in different ways.  Soldiers can have Epilepsy as a result of a traumatic brain injury sustained on the battlefield.  Some children may inherit Epilepsy as a part of a genetic syndrome that causes seizures.  My Epilepsy was caused by a prolonged seizure associated with fever when I had a virulent case of influenza at 16 months of age.  My first seizure, which lasted over 30 minutes, left a scar deep in my brain that served as a starting point for my future seizures.  The complex partial seizures, or seizures that only involve part of my brain, that I have had since adolescence frequently sneak up and dance around the edges of my consciousness, stealing slivers of my alertness just enough to leave me tired and spent after 15 – 30 seconds of involuntary swallowing and clenching of my left hand.  And although the partial seizures are subtle enough that only those closest to me would know something was amiss, they leave me feeling as if I have been battered, bruised, and in a fog for the rest of the day.

I have learned to hide my symptoms as much as possible.  In a world where there are still many misconceptions about seizures and Epilepsy, I find others squirming uncomfortably when I confess that I continue to have uncontrolled seizures. I notice colleagues changing the subject quickly when I mention Epilepsy.  Anytime I feel the characteristic aura of a looming seizure, I search for a safe place to sit and hide in case the simple seizure generalizes into something more.

I know I am one of the lucky ones.  After my first prolonged seizure as an infant, Epilepsy disappeared from my life for over a decade.  I had twelve years where the monster within my overexcitable brain hibernated and I was able to grow, develop, and learn normally.  My brain formed new connections around the area that was damaged after the first seizure.  The hormonal surges of puberty woke the sleeping monster deep within my temporal lobe and suddenly paroxysms of pulsing heat, confusion, headache, and barely perceptible movements of my mouth and face were overwhelming me ten to twelve times a day.  Epilepsy was awake and it was present to stay.

Since my official diagnosis of temporal lobe epilepsy at age 18, I have tried over fifteen medications and medication combinations for treatment of my seizures.  In 2003, during the middle of my pediatric residency training, I had a temporal lobectomy to remove the area of my brain that had been damaged during the seizure during infancy and the surrounding areas.  I was desperate for a cure for my seizures and prayed that one day I could continue my medical training and practice unencumbered with seizures and the mind-numbing effects of medications.

The surgery was successful without complications.  Five months later, the seizures were back.

But despite the fact that others can’t see outward evidence of my Epilepsy, it is my constant companion. Frequent auras remind me that the threat of having a seizure is ever-present.  Medication-induced fatigue tugs at me like an anchor, threatening to pull me out to a somnolent sea filled with waves of persistent tiredness that I fight to overcome every afternoon with all my strength.  At times, I feel as if I am a lone surfer in a tsunami of medication side effects, riding the sickening larger waves of dizziness, confusion, poor appetite, and headaches.  To moderate the side effects of the medication, I closely monitor my sleep, activities, and time that I take my anti-epileptic medications every day.  I live in constant fear that the slightest alteration in my routine will cause me to lose grip on my fragile lifeboat and drown in the angry sea.

When I was diagnosed with Epilepsy, I made a resolution to myself that seizures would never define me.  Medications will never rule me.  And despite the pulling at my anxiousness and self-conscious, Epilepsy would never dictate my choices in life. My husband and I have been blessed with three fantastic children (and three tumultuous pregnancies with several grand mal seizures) I have a busy pediatric practice and am able to do almost everything I dreamed of despite Epilepsy.  It’s time to lift the veil and step out of the shadows.  It’s time to share my story and the story of others so we can raise awareness and give others hope.

The more we talk, the more we understand.

Please pass it on.