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My mouth was dry and my throat burned. It was becoming hard to swallow. I hadn’t been allowed to drink or eat anything for hours because I’d been admitted to the emergency room and was hit with a barrage of tests. A young and apprehensive nurse came in holding a…

Since the COVID-19 pandemic hit, it seems like mental health issues have been discussed more than ever. According to the Mayo Clinic, global surveys in 2020 and 2021 “found higher than typical levels of stress, insomnia, anxiety, and depression.” But even after the height of the pandemic had…

This week’s solar eclipse got me thinking about the last time we had one, in 2017. At the time, I was running a thriving preschool with over 100 students. I’d gone on the trip of a lifetime to the Chichén Itzá Mayan ruins in eastern Mexico. And…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. The snap of a nitrile glove going on my nurse’s hand catches my attention and diverts my gaze from my phone. I see her holding a butterfly needle as she prepares to give…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Renal failure, liver failure, hemolytic anemia, 18 blood transfusions, plasmapheresis, dialysis, antibody therapy, post-traumatic stress disorder, heart damage, permanent uterine damage, and a mini-stroke — I never expected any of this, or…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Water hits my head for the first time in five long weeks, and feeling it flow down my back is like being reborn. I never knew how much a simple shower could heal my…

“You’re dying.” That was my introduction to atypical hemolytic uremic syndrome (aHUS), and I’d never heard of it. On that day, my whole world turned upside down. In September 2020, I was at the top of my game. As an active single mom in a new city, I’d purchased…

We take medication to get better after an illness or to keep us healthy when we have a problematic condition. I’ve never liked taking medicines, but with my atypical hemolytic uremic syndrome (aHUS) and several comorbidities, I have a slew of them that keep me alive. But sometimes, unfortunately,…

I was experiencing the worst migraine of my life. I could feel my heartbeat in my eyes and forehead. Rubbing my temples seemed like the appropriate thing to do, but it provided little relief. The fluorescent lights in the emergency room made me squint each time I lifted my head.

Living with a rare and chronic illness is horrible. It can hinder your quality of life, make it difficult to work, and even affect your relationships with family and friends. Medical treatments, doctor appointments, invasive testing, and medications are a lot for anyone to deal with — but especially for…