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.
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.
Scar over left temporal lobe after 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.”
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Artwork that Amparo created after epilepsy surgery
Amparo, her sister, and parents