Unmasking Myasthenia Gravis - a Column by 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…

The house is quiet past midnight, yet I’m fully awake as usual, thanks to my many health issues. Nighttime is when everything comes alive for me — chiefly my pain and other symptoms, but also my creativity and visions for the MG community, my plans for the next day, and…

Having a rare disease opens the door to many questions. It also presents the opportunity for well-meant advice that doesn’t always help the way it’s intended.  I get it — when you hear about someone’s struggles, you want to jump in and help fix them any way you can.

Having a sense of purpose is innate to the human experience. It gives us direction, satisfaction, and motivation in the present as we build for our future. Purpose drives innovation, invigorates passion, and stirs the embers of better days ahead. Just as it breathes life into every day, a lack of purpose…

Hope is an empowering word with an ambiguous interpretation. For each person, hope might look just a little different, but its crucial need in our lives remains integral.  When I was first diagnosed, I thought of myasthenia gravis and the emotional, mental, physical, and even spiritual journey…

The diagnostic process and the journey to correct a disease by effective treatment can seem linear on paper. The reality rarely matches up. In that reality, many with myasthenia gravis become aquatinted with emotional and mental fatigue, the uncertainty of where to place trust, and the weariness of…

Myasthenia gravis (MG) is nothing short of fickle. We are unwelcome companions, thrust into its foibles and constrained by its unpredictable nature.  Subsequently, MG has made my life an uncertain seesaw. In the blink of an eye, I have danced near death, and in the next, I’m seemingly…

Life is filled with the impatient burden of waiting as we eagerly look toward important milestones, big events, and even the outcomes of the unexpected — both good and bad. And while we can be restless as we keep our eyes on the horizon, these measured moments of waiting…

Chronic illness holds a lot of bittersweetness in its grasp. It takes away, and it gives. It teaches, and it humbles. One of the best opportunities it offers is the chance to give the gift of empathy and understanding to another. In suffering I have learned how to laugh…

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…