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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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