Once upon a time, I was healthy and vibrant, reveling in the promises of the future. There is something so delightful about the naivety of youth. It is unspoiled and untainted by the stains of this world. It thrives in the dreams of tomorrow and the wondrous audacity…
Unmasking Myasthenia Gravis - a Column by Rebekah Dorr
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…
Being a Patient Is Hard Work
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…
The Cost of Uneducated Care
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…
Recent Posts
- I’d like to make a movie about what living with myasthenia gravis is like
- Study ties Rystiggo to fewer hospital stays, less corticosteroid need
- Neostigmine eyedrops may ease drooping of eyelids in MG patients
- Patients shouldn’t have to struggle so much because of healthcare costs
- Study has ‘wonderful news’ for MG patients considering pregnancy