I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease began far before I was diagnosed in 2009. 

Living with a rare disease makes you grateful for everything that most people take for granted. Four brain surgeries later, I go on. The chronic EBV destroys my immune system, so… Read More