Columns

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Relationships are hard. Couples may face many challenges, such as family drama, scheduling and time management issues, the blending of two families, and disagreements. But what happens when a rare disease, medical complications,…

When I nearly died a few years ago from a rare disease I’d never heard of, I was understandably overwhelmed. And it wasn’t only because of thoughts about my own mortality, but also all of the comorbidities that came along with the disease. I hadn’t expected that I might…

Weight is a popular topic here in the U.S., and “skinny” seems to be the desired standard. Celebrities, regular working people, and even teens and children are constantly pressured to be thin. But what happens when you have a rare, chronic disease that wreaks havoc on your body? I spent…

I had to stand on my toes and take a deep breath in order to reach my carry-on luggage and drag it down. Then I wiggled my heavy weekender bag out from the seat in front of me where I had forced it to fit. I had an aisle seat,…

Becoming sick with a rare and chronic disease is life-changing. It can affect your health, physical strength, diet, and so much more. But I never knew I would gain new “superpowers,” too, including a better understanding of my own body. In September 2020, I spent almost two months in…

In our society, we’re encouraged to always be working, active, and busy. So when we finally get some free time, it’s an exciting thing. But what do you do when you have nothing but free time for weeks on end? In September 2020, I was in the intensive care…

Doctor appointments: They’re the bane of my existence but also a constant part of my life. Nephrologist, hematologist, primary care physician, gynecologic oncologist, pain management doctor, physical therapist, cardiologist — the list goes on. I see each of these doctors regularly. I nearly died in September 2020 and spent…

Dialysis, which performs the kidneys’ work by filtering blood, is hard on the human body. It’s usually given to patients whose kidneys are functioning at less then 15% because of injury, infection, disease, or other medical complications. When I was on dialysis, it caused me some atypical side…

Death is something no one wants to talk about, deal with, or experience. In September 2020, after an asymptomatic bout of COVID-19, I landed in the intensive care unit (ICU) for almost two months with multiorgan failure and hemolytic anemia caused by atypical hemolytic uremic syndrome…

A rare disease diagnosis can be scary, overwhelming, and life-changing, often bringing unexpected health complications and comorbidities. During my time with a rare disease, I’ve learned that I have a proclivity for medical drama. In September 2020, I nearly died when COVID-19 complications triggered atypical hemolytic…