My work and personal experiences have been closely tied to mental health, which led to my involvement with the International Advisory Board for the Columbia WHO Center for Global Mental Health. As a child, I struggled with Autoimmune Dysregulation and Erythromelalgia, conditions that caused chronic pain, immune dysfunction, and emotional strain. While managing these challenges, I also faced bullying due to physical changes from necessary medications. In my early twenties, I developed Visual Snow Syndrome (VSS), a neurological disorder that affected my vision, hearing, cognition, and sensory processing. Confronted with misdiagnoses, mistreatment, and a stark lack of awareness within the medical community, I recognized that my experience was part of a much larger global issue: millions of individuals of all ages lived with under-recognized conditions that profoundly impacted both physical and mental health, yet they lacked resources.
Determined to address these issues, I channeled my experiences into activism for VSS and health reforms. I organized the first Visual Snow Conference and founded the Visual Snow Initiative (VSI), a global nonprofit focused on awareness, education, resources, patient advocacy, treatment development, and research for VSS. VSI funded critical research across seven countries, which resulted in the clinical and scientific recognition of VSS, led to discoveries regarding its biological basis and pathophysiology, and helped develop viable treatment options where none had previously existed. We also created the first Diagnostic Criteria for VSS, the first Global Directory of VSS Physicians, educational videos, multimedia resources, and physician-patient tools. In addition, we secured a historic ICD code for VSS, allowing for official recognition, diagnosis, and the potential for broader support in medical care.
My academic background in health communication, intercultural communication, behavioral sciences, and qualitative data analysis helped me translate complex medical concepts into accessible, science-based resources. As a Cuban-American woman, I strive to offer meaningful insights into mental health stigma and advocate for resources throughout Latin America and the Caribbean. As a member of the Advisory Board, I hope to support the Center in several key initiatives, including raising awareness, advancing global education on physical and mental health, creating resources for patients worldwide, advocating for improved patient-physician communication, and enhancing mental health support in under-served regions. Beyond my advocacy work, I am passionate about showing that even in the face of health challenges, individuals can be multifaceted, with diverse interests and strengths. Nonconformity, resilience, and independent thinking are central to my identity, and I believe that reducing someone to a single experience overlooks their complexity. My passions include neuroscience, photography, and spending time in nature, reflecting my belief in the ongoing evolution and intricacies of individuals.
Academic Concentrations:
Behavioral Sciences, Health Communication, Intercultural Communication, Qualitative Data Analysis
Research Concentrations:
Human Subjects Research: Social-Behavioral-Educational Research, Visual Snow Syndrome, Neuroscience, Marginalized Medical Conditions (Physical and Psychological Impacts)
Highlights:
- Founder, Visual Snow Initiative
- TEDx Speaker (What is Visual Snow? Transforming Anguish into Action)
- 2024 UMiami “30 Under 30” Award-Winner
- Author & Collaborator, Oxford Mindfulness
- Global Research Collaborator