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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…

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…