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Rare diseases are, by definition, uncommon, but I’ve been surprised by how many people are affected by them. About 1 in 10 people in the United States has a rare disease, or around 30 million people. So it’s likely you know someone who does. But as Rare Disease…

“Go big or go home” has always been my philosophy. But I never planned on applying that motto to my health. One could say I definitely won the lottery no one wants to win when it comes to rare diseases and complications. To start, I’ve been living with lupus…

Facebook Memories is one of my favorite features on that social media platform. It reminds users of what they posted that day in years past. This week, I came across a Facebook Memory from two years ago that stirred up a lot of emotions. On Feb. 5, 2021, I was…

End-of-life preparation: What a bleak and unsettling subject. Will you be buried or cremated? Who will take your children if you die young? How will your assets be dispersed? I didn’t think I’d have these concerns at age 36, when I almost died. Death is inevitable, unfortunately, but most of…

Mental health is a topic that we’re starting to hear about almost daily in our society. It’s a subject that’s been taboo to speak about for too long. Finally, though, it is being acknowledged for the impact it has on our lives — nearly 20% of adults in the…

Those of us living with a rare or chronic disease frequently talk about hospitalizations, medications, symptoms, fears, near-death experiences, and so much more. But something we don’t often talk about are finances. When the COVID-19 pandemic descended upon us, the International Labour Organization warned in April 2020 that nearly…

As my eyes slowly opened, I realized my vision was blurry. My head was throbbing, and I could taste blood. My right cheek felt itchy from the fibers pressed against it. But I could feel warm sunlight bathing my left cheek. I blinked hard to get my vision to clear…

Ding-ding, ding-ding. The ringing echoes throughout the unit, causing a brief silence. It sounds like the toll of a bell as a boat leaves the harbor. Then the unit erupts in unanimous applause and cheering. These are the sounds I hear at least once during my chemotherapy treatment every…

It’s my favorite time of year: holiday season! That’s when we have Halloween, Thanksgiving, Christmas, New Year’s, and December birthdays for me and my kids. Having two autoimmune diseases and subsequent medical issues, however, makes it hard for me to participate in all holiday events. It’s easy to feel I’m…

I can’t think of a worse personal fear then having two autoimmune diseases during a pandemic. Every cough I hear in public sends me into a panic. I hold my breath while walking past someone wiping their nose on their sleeve. I’m filled with anxiety when someone behind me in…