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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…

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…

Warm tears welled up in my eyes, and I could feel my neck and face turning red. Something I’d long hoped for was slipping out of my hands. So I asked the question I was burning to ask: “I have dual enrollment. If Medicare won’t cover tirzepatide [often known by…

I winced as I stepped down onto a stair with my left foot. A swirl of dull, aching pain was joined by the feeling of skin tearing and puffiness. It felt like my ankle had an inflated life preserver wrapped tightly around it, cutting off more of my circulation with…

Long, voluminous, deep brown wigs; charcoal eyeliner; fluffy eyelashes and lash glue; sparkly rich tones of russet and copper eyeshadow; shaped and ombre drawn eyebrows; blood red lipstick coated in shiny gloss; perfectly manicured, gold glitter acrylic overlay on my nails; and beautiful, flirty sundresses: I use them all to…

I nervously tapped my foot while waiting in the examination room to meet my new nephrologist. I could hear him talking in the next room, so I knew he was finishing up there. When he walked in, he extended his hand and introduced himself. But he stumbled on his words…

I grimaced, pulling my arm back in reaction to the pain surging through my forearm. I’d bumped a large purple bruise when I lifted a box. Rubbing my hand over the bruise, I wondered, Where did that come from? Come to think of it, I had several new large and…

I’ve always liked to think that age is just a number. Being older doesn’t mean you have less value, and being younger doesn’t mean you lack life experience. Our society seems to place more value on youth, but in the rare and chronic disease world, I’ve learned that being young…

When you have a chronic or rare illness, healthcare becomes complicated. Adequate coverage, rising costs, and navigating unclear systems can be just as stressful as suffering with an illness. I recently moved to another state, and even though I began transitioning all of my medical care weeks before my move,…

“So is this normal for you?” My hematologist crossed one arm over his chest and supported his chin with one hand as he gave me a concerned and puzzled look. My blood pressure was 175/146 mmHg, which is considered very high. I sighed. “Yes, my blood pressure has been mostly…