Columns

Each week, I write this column because I love sharing my raw experiences while living with two rare diseases and various comorbidities. I usually discuss stressful issues associated with being an atypical hemolytic uremic syndrome (aHUS) patient. But today, I’m going to switch it up and talk about…

It’s normal to feel embarrassment, discomfort, or shame in medical situations. Being in a vulnerable state can be a humbling experience. In September 2020, I nearly died from multiorgan failure caused by atypical hemolytic uremic syndrome (aHUS). I still haven’t wrapped my head around it. I ended up…

“You’re so brave.” I’ve been told this numerous times. I have a good friend who says it to me often. But how does one define bravery? When I think of bravery I think of someone fighting to right an injustice. Fighting for someone who can’t defend themselves. Or standing up…

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…

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. 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…

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…