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…
A memory popped up on my Facebook page recently that left me speechless. I think that sometimes we are so busy simply placing one foot in front of the other and plodding through our daily tasks that we forget to appreciate how far we have come and the battles we…
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…
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