Columns

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…

Make Yourself Priority No. 1

When I was diagnosed in 2004, it was a shock to my entire family. We had never heard of this disease and had no idea what it meant for my future. I had to take a year off school due to hospitalizations, treatments, and a thymectomy. I felt like…

You Can Be Happy for Others While Still Mourning

Recently, I was chatting with some of the other ladies in my support group who have been on a similar path as me — constant hospitalizations and relapses. They have also been through the heartbreak of having yet another treatment not work and the uncertainty of their future, health-wise. We…

The Guilt of Being Ill

Guilt is a well-acquainted friend for anyone living with myasthenia gravis. Poor health often means that our participation is limited, our range of executable activities are restricted, and our energy levels sometimes feel non-existent. This does not only affect us but also those closest to us, and that is where the…

It Is Important to Learn to Listen to Your Body

A huge part of learning to live with myasthenia gravis is figuring out what triggers symptom flare-ups. This is a very personal journey of understanding your body and learning to listen to the subtle cues it sometimes sends to take it easy. These cues can be anything from heavy-feeling eyes, voice…

Living with the Side Effects of Cyclosporine

Myasthenia gravis often requires me to adapt my expectations or approach in several ways. One aspect I am currently struggling with is the paradox of cyclosporine, which eases my symptoms but also introduces some unforgiving side effects. Before starting cyclosporine as my long-term immunosuppressive treatment, I was considered…

Just Imagine What This Disease Is Like

You never imagine that your life could change in an instant. You never imagine that your “normality” can get turned upside down and spun around like it’s been let loose in a washing machine. You never imagine that you will be told by doctors that they don’t know what more…

2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.