One of my closest friends, a fellow MG warrior and mom to an MG teen with juvenile arthritis, told me tearfully one day about how her daughter never got to “ring the bell.” You see, her daughter’s primary juvenile arthritis (JA) treatment was chemotherapy infusions administered in an infusion suite…

It takes serious work to be a patient, regardless of the disease you have. The lay person’s portrayal of chronic illness and the subsequent clinical perceptions of patients leave a lot to be desired in their inadequate awareness, and, at times, acceptance of our reality. These impressions barely scratch the…

During my most critical year with myasthenia gravis, I spent an inordinate amount of time in the emergency room and on various hospital floors. A good deal of the ER staff soon got to know me by name and, while clueless as to how to help my rare but potentially deadly…