As I clung to life in the hospital, I was diagnosed with vEDS

Posted January 19, 2021

Claudia sits in a hospital bed with wires attached to her chest

This story was shared in Spanish, the English version has been translated and in the event of any discrepancies, the original version below with prevail. 

I have always been the most vulnerable in my family, half of my life has been in hospitals and medical appointments, everything hurt and I was sick all the time. 

No one could ever give me a diagnosis, but I knew that my body was warning me that something was not right and I kept investigating. One morning I woke up with a pain that I had never felt before. I passed out, then I arrived at the hospital and my struggle to live began. With internal bleeding, I was torn between life and death with little hope that I would survive. 

I had lots of tests done to understand what was happening in my body, and then in that battle for my life I was diagnosed with vascular Ehlers-Danlos syndrome (vEDS), and that’s when I was finally able to put together the puzzle. My life has never been the same since that episode but thanks to that day I have a diagnosis and today I cling to life more than ever.

Original:

Siempre fui la mas vulnerable de mi familia, la mitad de mi vida ha sido en hospitales y citas medicas, todo me dolía y me enfermaba todo el tiempo.

Nunca nadie pudo darme un diagnóstico, pero yo sabia que mi cuerpo me estaba avisando que algo no estaba bien y seguía indagando. Una mañana me levanto con un dolor que nunca antes había sentido, desmayada llego al hospital y empieza mi lucha por vivir. Con un infarto en el riñón y un sangrado interno me debatía entre la vida y la muerte con pocas esperanzas de que sobreviviera.

Me hicieron cantidades de exámenes para entender que pasaba en mi cuerpo, y entonces en esa batalla por la vida me diagnosticaron una enfermedad rara que pocas personas la tienen en el mundo, VEDS, y es entonces cuando por fin pude armar y rompecabezas. Mi vida nunca volvió a ser la misma desde aquel episodio pero gracias a eso hoy tengo un diagnóstico y hoy me aferro a la vida mas que nunca.

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