Columns

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…

When you are diagnosed with a rare disease, you may think that your life is over. You read all of the different outcomes on the internet and begin to fear that the worst is here. Unfortunately, this may be true, but often your diagnosis may be more easily managed than…

This year, my husband and I will have been married for seven years. They say there is a thing called the “seven-year-itch,” and that absolutely terrifies me. We are just now finding our new normal. When Warren and I met, I recently had undergone a nasty breakup. My ex’s parting…

On Saturday, I attended an autoimmune disease seminar, where I listened to speakers talk about the importance of good gut health and how it affects the entire body. Experts told the audience that the microvilli in the digestive system are important for gut health, and we need the good…

It can be difficult being friends with someone who is chronically ill. They often have to cancel on you, or they might be exhausted at the start of an event and practically have to be carried out at the end. You may not know what to say to them…