Columns

A rare disease diagnosis takes you on a different path than that of your friends and family. It means you have to count your spoons, plan your life, and work around your limitations. You may not get to study for your dream career, and your leave from…

I drink a lot of Coke. People have strong opinions about that. For example, “But do you know how bad it is for your health?” Or, “You should cut out Coke and follow this generic diet, and your health will improve.” Or, “Maybe you would feel better if you drank…

When you finally receive your diagnosis of myasthenia gravis, it will probably come as a huge relief. You have likely been sent from doctor to doctor as they try to discover what is going on with your body. You’ve had countless blood tests and scans, and retold your story many…

I recently completed my university degree and became a speech-language pathologist. I’ve spent several years studying to become a healthcare professional because I want to help people. But little did I know that helping others would become easier after I needed help myself. When I began my studies, I…

I wake up sweating. I feel tears pouring down my cheeks, and my throat is sore from screaming. Where am I? Why is it so quiet? I get out of bed, walk to the kitchen, and pour myself a glass of cold water, splashing a little onto the floor as…

A broken promise can often lead to immense disappointment. For someone with myasthenia gravis (MG), a failing immunosuppressive medication can easily lead to a broken heart. Immunosuppressive medications combat the autoimmune nature of MG. Unfortunately, I have refractory seronegative MG. Refractory means that either I do not respond to…

When people are diagnosed with a specific condition, they might be able to read about it on the internet or from information provided by a doctor. For the most part, they might know what to expect. They also might be able to talk to other patients with the same…

On a recent day, I popped out to the shops to pick up a few items when I realized I had left my Mestinon (pyridostigmine) medication at home. It was time to take the tablets, but I didn’t have any with me. It’s unlike me to forget my medications,…

I recently attended the South Africa’s Women Givers Awards. I had been invited to the awards ceremony as a nominee for my work with the Rare Bear Project. Bontlebame, a nonprofit focused on empowering women from all walks of life, organizes the awards that honor women who give…

I have started this column many times, but I have had trouble putting my emotions into words. I am trying to digest and cope with how my body is slowly failing me, and I don’t know how I feel about it. If you have been following me, you know that…