Columns

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. This column describes the author’s own experiences with some alternative treatments. Not everyone will have the same response to them. Consult your doctor before starting or stopping a therapy. I’ve always found alternative…

This year, I finally did something huge on my bucket list: I went to Greece. Santorini, to be specific. The white volcanic rock, the sea cliffs overlooking the caldera, the beautiful, iconic blue steeples, and even the flying dress photo shoots — I wanted to see it all. But when…

Note: This column was updated Jan. 17, 2025, to correct that Soliris is an antibody therapy. My heart began to race. My breathing became shallow. I felt a bead of sweat form and run down my brow. My stomach churned and a lump formed in my throat. Was I…

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…