Lucia Ortiz | Faces of Epilepsy

July 22, 2019

Lucia Ortiz | Faces of Epilepsy

Lucia Ortiz, an immigrant from Cuba has now been living in the US for nearly 10 years. More than half of that has been seizure free due to the assistance of consistent neurological care and excellent follow ups with wrap around services offered at Epilepsy Alliance Florida. She was referred to EAF through her primary care physician who recommended that she interact with other persons with her condition. 

Lucia had her first seizure at about 6 months of age in her home country of Cuba. At the time she was not diagnosed with epilepsy, however she continued to have clonic-tonic seizures and was soon thereafter diagnosed with epilepsy. She was quickly placed on anti-epileptic drugs which helped control her seizures. Lucia was eventually taken off the medications and continued to live as normal a life as possible; she went to school, had close relationships with her friends and family and even married her high school sweet heart. Eventually, they and had a daughter but along with the joys of parenthood also came stressors and hardships as her epilepsy came back with full vengeance. Lucia reports that her seizures have caused her to suffer from severe memory issues as there a constant fog clouding her. After having several seizures as an adult she was placed on anti-epileptic drugs once more, however this time it has not been controlled completely. 

During this time her country was going through great turmoil and medications and even food was difficult to find. Due to Lucia’s worsening condition and inability to work, the young family of 3 decided that now was a good time as any to head to the United States in search of a better life. Lucia packed a small back with their belongings and headed out into open waters. The family eventually arrived in the US where they settled down with family until Lucia’s husband found a job. They moved out and were able to move into a small apartment where the family currently still resides. All seemed well except Lucia’s seizures were uncontrollable and it seemed that anything and everything they attempted to do would not work. That is when her primary doctor recommended that she seek assistance from Epilepsy Alliance Florida in attempts to meet others like her and accept her fate of living with epilepsy. 

Reluctantly Lucia became a member of Epilepsy Alliance Florida, through EAF Lucia was now able to obtain access to evidence-based neurological care. Lucia for the first time in several years had an EEG and was able to obtain the psychological care she so desperately needed. After trying several different types of medications Lucia was placed on a regimen that seems to have assisted in a drastic reduction in her seizures from 3 a week to about 1 a month. 5 years passed since Lucia had come to the US and she is now ready to apply for citizenship. The case managers and staff at EAF graciously assisted her in obtaining the necessary documents and guided her throughout this process. Lucia who is still suffering from severe memory problems was quickly discouraged after failing her first attempt at the practice examination for her citizenship. Years passed and the citizenship was placed on the back burner as she focused on assisting her daughter in completing high school and applying to different colleges. After speaking with her case manager at EAF Lucia was encouraged to apply yet again for her citizenship exam except this time with the assistance of the staff psychologist she was able to obtain accommodations for her memory impairment and passed the exam. She became a citizen and is now in the process of obtaining SSDI. 

Although life at times has been difficult beyond belief for Lucia and her battle with epilepsy and its challenges are nowhere near over, Lucia states that without the assistance of EAF she would not be where she is today. She thanks the support that she receives from EAF and is grateful for the people she has met while attending the walks and support groups. “Living with a chronic and debilitating condition used to define who I was now; it’s just one of the many parts of me.” 

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