Adriana Alvarez had her first seizure at 15, a convulsion with violent muscle contractions and loss of consciousness that was ruled out as a syncope at first. Then at 17, she had a second convulsion in front of her alarmed father and was rushed to ER where she was referred to a neurologist. Adriana’s seizures, of the generalized tonic-clonic kind, became uncontrollable just as she was about to realize her dream of going to college. She was afraid that she wouldn’t be able to keep up with a demanding coursework and that her seizures and resulting absences would eventually force her to drop out. In addition, she couldn’t work or have health insurance and had to apply for Medicare through her father’s disability.
Her pediatric neurologist at Miami Children’s Hospital referred her to Epilepsy Alliance Florida (EAFLA) for support and services and that’s when things turned the corner for her. At EAFLA, Adriana met with psychologist, Dr. Judy Siskind, who did the necessary psychological evaluations and documented her need for school accommodations, free of charge. Dr. Siskind’s reports enabled Adriana to get extended testing time from FIU’s Disability Resource Center the four years she was there. This adjustment gave Adriana, who was studious and determined, the confidence to continue her studies and do well academically.
Adriana had a setback when her first adult neurologist suddenly dismissed her as a patient without any prior warning, a decision that baffled her. Although she scheduled an appointment with a different neurologist, she was hurt by the experience and contacted EAFLA for emotional support. The staff at EAFLA gave her the exact care and guidance she needed at the time, and even offered free medications in between doctors. She says, “I owe the Alliance so much. I’ve participated in their annual dinners and for some years in their walkathons to help raise money for an organization that has helped me and given me so much!”
Adriana is a trooper. Not only did she graduate with a bachelor’s degree from FIU, but she also attended FSU for graduate school where she studied Clinical Social Work. During her last semester, she convinced FSU to develop an agreement for an internship program with the University of Miami. As a result, Adriana was the first Social Work intern from FSU at UM, ever. She graduated from FSU in 2019 and, shortly after, passed her licensure exam! She joined UM as an MSW in early 2020 and is currently working as an Oncology Social Worker at UM’s Sylvester Comprehensive Cancer Center. She married in 2016 and is expecting a baby girl due next April. Now that she is done with her studies, she plans to resume her participation in EAFLA’s activities after her baby is born.
Adriana doesn’t downplay the challenges she and others who have epilepsy face. Even now that she is pregnant, she is cautious. However, she believes that the support from EAFLA can make a world of difference in the lives of individuals such as her. She credits EAFLA for relentlessly working on destigmatizing epilepsy and raising awareness of a disorder that is still not widely understood. Mostly, she adds, it is the services, resources, and caring support that EAFLA’s staff provides for its clients that makes individuals like her feel that they are not alone, can dream like everyone else, and even achieve those dreams with the support from their friends at EAFLA.
