Columns

Losing my identity after I had to stop working due to aHUS

Employment: Dare I say it’s a necessary evil? American culture is very career-focused. Everything costs money, which most people earn by working. And with the cost of living creeping higher each year, many are working more than ever just to make ends meet. But what happens when you suddenly become…

Just how rare is atypical hemolytic uremic syndrome?

What constitutes a rare disease? In the U.S., the Orphan Drug Act defines a rare disease as any disease affecting fewer then 200,000 people. The National Organization for Rare Diseases (NORD) reports that over 10,000 rare diseases exist. That’s way more than I would’ve imagined. Let’s compare a…

Star fruit dangers: An innocent treat is a threat to my kidneys

Star fruit: It’s sweet, crisp, bright, refreshing and, for me, potentially deadly. Starbucks’ Kiwi Starfruit Refreshers (now discontinued), star fruit margaritas, or any other star fruit treats I once enjoyed are all a “no” for me now. Sadly, the fruit, also known as carambola, is something I just can’t…

Getting diagnosed was only the beginning of my aHUS journey

Thrombocytopenia, liver failure and hematoma, hysterectomy, end-stage renal disease, hypertrophic cardiomyopathy, uncontrolled hypertension, chemotherapy-like side effects, muscle atrophy, post-traumatic stress disorder, chronic fatigue, edema, May-Thurner syndrome, nerve damage, and anemia. That’s a “quick” list of the comorbidities that accompanied my atypical hemolytic uremic syndrome (aHUS). Being diagnosed with a…

Handling the financial burdens of a chronic illness, part 2

Second in a series. Read part one. Which is more important, your cellphone or your internet? That can be a tough decision, driven by finances and circumstances. On one hand, imagine you have a chronic illness and you need a phone for emergencies. On the other, imagine your phone…

Handling the financial burdens of a chronic illness, part 1

This column is the first in a three-part series about the financial burdens of rare diseases and chronic illnesses. $1.3 million. $1,500. $84,000. Those are some of the costs I was left with when I nearly died of atypical hemolytic uremic syndrome (aHUS) in 2020. My hospital bill for…

Losing your career and income can mean losing your identity

In American society, work life is a huge part of our culture. Many of us are pushed to complete primary school, attend higher education, and start a career, in which we’re expected to work until full retirement age. According to the Social Security Administration, that should be age 67…