Columns

On the inside of my right arm, just above the bend of my elbow, I have a small, circular scar. It’s a shade lighter than my skin tone and about the size of a peppercorn. It isn’t very noticeable, and I think I’m the only one who can…

Life with myasthenia gravis has taken some dramatic turns and created both challenges and opportunities. One of those dramatic moments was having to decide in my early 20s whether I want to have children. Many medications I take have side effects. In previous columns, I discussed the side effects…

I started coughing last week. Really coughing. The kind that hurts your ribs after a while, and wakes you up during the night. It’s the kind of cough that makes people move away from you in public as they whisper behind their hands. I had flown to another…

On March 15, South Africa waited with bated breath for its president to address new measures to fight COVID-19. Countless messages of anticipation cycled between family and friends in those moments. “Do you think schools will be closed?” “What will happen to our jobs?” “Will our hospitals be able to…

Last week, we had the first COVID-19 diagnosis in South Africa, and everyone immediately dashed to their panic stations. People flocked to pharmacies to buy all of the masks, hand sanitizers, and hand soap they could find. Stores are now sold out of these items across the country, and…

Being diagnosed with a rare disease is heart-wrenching and difficult, and something one usually never expects. It changes the course of a person’s life, leading them down a path filled with stumbling blocks, tree roots, cliff edges, and deep valleys. But the path is also strewn with unexpected flowers, rainbows,…

Receiving a diagnosis for a rare disease takes an average of 4.8 years, according to one study. That means almost five years of daily struggles with an unknown cause. It means being doubted by doctors and subjected to countless tests, and having constant feelings of insecurity. Without answers, it’s…

Rare Disease Day on Feb. 29 is an important advocacy effort for every one of us fighting a rare disease, every minute of every day. It is a day for spreading awareness about us and for helping people to learn about our conditions. In South Africa, where I…

I had chemotherapy about 10 days ago and returned to work later that day to ensure that I was on top of things before a weekend of recovery. My body really doesn’t handle chemo well, and I spent the entire weekend curled up in bed or in front of…

Last week, I visited my doctor because I could feel my health slip-sliding down a waterslide and didn’t want to end up back in the intensive care unit. When I walked through the clinic’s double doors and pumped hand sanitizer onto my hands, I felt like I was immediately transported…