Apoyo para EDS, en tu idioma.
EDS Support, in your language.
Almost everything written about Ehlers-Danlos Syndrome exists only in English — but EDS does not discriminate by language. Sheila is a Master’s-prepared biomedical scientist, nationally credentialed medical interpreter, and genetically confirmed hEDS patient who has spent 15+ years making healthcare legible for Spanish-speaking patients across oncology, pediatrics, critical care, and research.
Casi todo lo escrito sobre el Sindrome de Ehlers-Danlos existe solo en ingles — pero EDS no discrimina por idioma. Sheila es cientifica biomedica con maestria, interprete medica con credencial nacional y paciente de hEDS confirmada geneticamente, con mas de 15 anos haciendo el sistema de salud comprensible para pacientes hispanohablantes.
Sheila holds a Master of Biomedical Sciences and has built her career at the intersection of medicine, language, and advocacy. Her credentials are not a list of titles — they are a record of being in the room when it mattered most: at bedsides, in surgical suites, in ICUs, and in the homes of patients trying to make sense of what the hospital just told them.
Sheila tiene una Maestria en Ciencias Biomedicas y ha construido su carrera en la interseccion de la medicina, el idioma y la defensa de pacientes. Sus credenciales no son una lista de titulos — son un registro de haber estado presente cuando mas importaba: junto a camas, en quirofanos, en UCI y en los hogares de pacientes tratando de entender lo que el hospital les acabo de decir.
At a nationally recognized children’s hospital, Sheila served as Head of the Family Advisory Council — working directly alongside the in-house interpreter team to help pediatric patients and their families, particularly those from underserved and Spanish-speaking communities, understand their child’s diagnosis, treatment plan, and rights within the system. This was not administrative work. It was front-line, family-by-family advocacy in one of the most emotionally charged environments in medicine.
En un hospital pediatrico de reconocimiento nacional, Sheila se desempeno como Directora del Consejo Asesor Familiar — trabajando directamente junto al equipo de interpretes para ayudar a pacientes pediatricos y sus familias, especialmente de comunidades hispanohablantes desatendidas, a entender el diagnostico, el plan de tratamiento y sus derechos dentro del sistema.
At Moffitt Cancer Research Center, one of the nation’s premier oncology institutions, she served on the medical interpreter team — navigating cancer diagnoses, chemotherapy decisions, clinical trial explanations, and end-of-life discussions. Precision of language in those settings is not optional. It is the difference between a patient who understands their options and one who goes home confused and alone.
En el Centro de Investigacion del Cancer Moffitt, formo parte del equipo de interpretes medicos — navegando diagnosticos de cancer, decisiones de quimioterapia, explicaciones de ensayos clinicos y conversaciones de fin de vida. La precision del lenguaje en esos entornos no es opcional. Es la diferencia entre un paciente que entiende sus opciones y uno que regresa a casa confundido y solo.
Her published research at the University of South Florida centered on the Care Transitions Intervention (CTI) — a program she led as head coach, designed specifically to support Spanish-speaking senior patients navigating the transition from hospital discharge back to home. The work addressed one of the most dangerous gaps in healthcare: the moment when patients must independently manage medication changes, follow-up appointments, and care instructions in a language they may not fully speak. That research was publishable because the results were measurable and the need was undeniable.
Su investigacion publicada en la Universidad del Sur de Florida se centro en la Intervencion de Transicion de Cuidado (CTI) — un programa que lidero como entrenadora principal, disenado para apoyar a pacientes mayores hispanohablantes durante la transicion del alta hospitalaria al hogar. El trabajo abordaba una de las brechas mas peligrosas en la atencion medica.
She has also served on international surgical mission trips to Peru, providing real-time interpretation for pediatric cleft palate procedures — supporting families through informed consent, surgical risk discussions, and post-operative instructions in a high-stakes, emotionally intense environment.
Tambien ha participado en misiones medicas internacionales en Peru, brindando interpretacion en tiempo real para procedimientos pediatricos de paladar hendido — apoyando a familias durante el consentimiento informado, riesgo quirurgico e instrucciones de cuidado postoperatorio.
What sets Sheila apart from any other health educator is what she has endured as a patient herself. She carries a genetically confirmed diagnosis of hypermobile Ehlers-Danlos Syndrome and has been through the full medical gauntlet that EDS demands. She has undergone nerve conduction studies covering the upper body, lower body, and peripheral nervous system — sitting through every stage of the process, from electrode placement to the electrical stimulation that maps how signals travel through damaged tissue. She has had a spinal tap. She has lived with thoracic outlet syndrome, leg length discrepancy, chronic joint pain, and years of physical therapy.
Lo que distingue a Sheila de cualquier otro educador de salud es lo que ha soportado como paciente. Lleva un diagnostico confirmado geneticamente de Sindrome de Ehlers-Danlos hipermovil y ha pasado por el recorrido medico completo que exige el EDS. Se ha sometido a estudios de conduccion nerviosa que cubren el cuerpo superior, el inferior y el sistema nervioso periferico. Ha tenido una puncion lumbar. Ha vivido con sindrome de salida toracica, discrepancia de longitud de piernas, dolor articular cronico y anos de fisioterapia.
She has also faced a complication that few providers even connect to EDS: a connective tissue crisis affecting her right eye that came dangerously close to costing her vision entirely. That experience — navigating ophthalmology, urgent specialist referrals, and the terror of potential blindness while already managing a poorly understood systemic disease — is part of what drives her. She knows exactly what it means to fight for answers in a system that is not designed to hear you.
Tambien ha enfrentado una complicacion que pocos proveedores conectan con EDS: una crisis del tejido conectivo que afecto su ojo derecho y estuvo peligrosamente cerca de costarle la vision por completo. Esa experiencia — navegando oftalmologia, referencias urgentes a especialistas y el terror de la ceguera potencial mientras ya manejaba una enfermedad sistemica poco comprendida — es parte de lo que la impulsa.
Born in 1991 and raised in the Puerto Rican community, Sheila brings not just clinical credentials but cultural fluency — an understanding of how Spanish-speaking families experience the healthcare system, what gets lost in translation beyond words, and what genuine advocacy looks like for a community that has historically been underserved by both medicine and health education resources.
Nacida en 1991 y criada en la comunidad puertorriquena, Sheila aporta no solo credenciales clinicas sino fluidez cultural — una comprension de como las familias hispanohablantes experimentan el sistema de salud y lo que significa la verdadera defensa para una comunidad historicamente desatendida.
Nine vertical bars rise and fall like an audio waveform — the visual shape of a voice being heard. The first four are black, the color of the zebra’s stripes. The middle three shift to teal: the distinct frequency of EDS itself, rare and unmistakable, the way a zebra is among horses. The final two return to black as the signal settles.
Nueve barras verticales suben y bajan como una forma de onda de audio — la forma visual de una voz siendo escuchada. Las primeras cuatro son negras, el color de las rayas de la cebra. Las tres del centro cambian a verde azulado: la frecuencia distintiva del propio EDS, rara e inconfundible. Las dos finales vuelven al negro cuando la senal se asienta.
In medicine, a zebra is what doctors are taught to stop looking for — “when you hear hoofbeats, think horses, not zebras.” EDS patients spend years being told their symptoms are something ordinary. The logo is a quiet refusal of that. It says: this voice is real, this frequency exists, and it deserves to be heard — in every language.
En medicina, una cebra es lo que los medicos aprenden a dejar de buscar. Los pacientes con EDS pasan anos siendo ignorados. La marca es un rechazo silencioso de eso. Dice: esta voz es real, esta frecuencia existe, y merece ser escuchada — en todos los idiomas.
“Most of what exists about EDS is written in English. Most of the people who need it aren’t reading in English. That gap costs people years of their life — and I know exactly what those years feel like.”
“La mayoria de lo que existe sobre EDS esta escrito en ingles. La mayoria de las personas que lo necesitan no leen en ingles. Esa brecha le cuesta anos de vida a la gente — y se exactamente como se sienten esos anos.”
— Sheila, M.S. · La Cebra Fuerte
Book a session with Sheila and get EDS education, appointment prep, and navigation support — in the language you think in, from someone who has been exactly where you are.
Reserva una sesion con Sheila y obtene educacion sobre EDS, preparacion para citas y apoyo de navegacion — en el idioma en el que piensas, de alguien que ha estado exactamente donde tu estas.
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