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…
Unmasking Myasthenia Gravis — Rebekah Dorr
In the years since my diagnosis of a rare, incurable disease, I have learned about unspoken rules that have been thrust upon me and the social expectations that quickly follow. Whether intentionally or not, there is a subtle, yet real, desire by others to see my health journey end…
Rebekah Dorr -- Unmasking Myasthenia Gravis
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
- What not to do when living with myasthenia gravis
- After my MG diagnosis, I realized the clues had been there all along
- The traitor within: Navigating the internal triggers of myasthenia gravis
- Living with myasthenia gravis is a full-time job
- Does myasthenia gravis really have that much power over me?