Columns

Recently, I attended an event that reminded me of the importance of speaking up, letting others into your world, and starting a conversation to create awareness. The event was organized by the South African nonprofit organization Tell, which stands for “Transplant Education for Living Legacies.” It aims to encourage…

Hearing the words “you have a rare disease” is not something you ever expect. Nor is it anything you could ever really prepare for. But unfortunately, it does happen — and it may have happened to you if you are reading this. Going to a general practitioner when you have…

As a part of the rare disease community, I interact with many people who have unique differences to what society deems “normal.” They may have ports or permcaths, feeding tubes or nasogastric tubes. Perhaps they are in a wheelchair or walk with a limp. They may have…

Living with myasthenia gravis means living in a constant state of doubt from myself and others. Fighting an invisible illness has taken a toll on my sanity. I have both good and bad days. My health constantly fluctuates, and so does the perception of my disease’s severity. On…

Last weekend, I was lucky enough to attend an Ed Sheeran concert. Passenger opened for him, and I danced the night away, smiling so much that my cheeks got sore. I have been to concerts before, but never any quite like that one. It was a long day, but luckily,…

When I was first diagnosed with myasthenia gravis, I already was headed for a crisis. I had been battling symptoms for a couple of months, yet all of the doctors told me they were psychosomatic. They said that if it wasn’t anorexia, then it must be something similar. By the…

When I received my rare chronic illness diagnosis, I felt like I was all alone in the world and nobody truly understood what I was going through. My friends and family felt sorry for me, but they didn’t understand the extent to which my condition affected my life. I was…

Editor’s Note: This column discusses the sensitive topic of suicidal ideation.  The moment doctors diagnosed me with myasthenia gravis (MG), they prescribed me antidepressants. It didn’t make much sense to me at the time. I thought a diagnosis would result in treatment that would restore the life I…

I have been housebound since my stem cell transplant and was starting to get rather crabby about the whole situation. I am used to independence — visiting friends and going to work — so this has been a very trying time. However, it has also been good…

Last weekend, I watched the movie “Wonder” again — for probably about the fifth time. The first day it was released in South Africa, I sat in the cinema crying my eyes out. Since then, I have watched it whenever I have spotted it showing on the television, as…