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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…

My eyes sting and my vision is blurry. I rub my right eye and notice black and brown makeup smeared across the back of my hand. Crap. I forgot to wash off my makeup. My throat is dry and the room is dark. There’s no sunlight coming from the window. I…

A shiver went down my spine. I crossed my arms and clenched my fist to try to warm up. My teeth began chattering, and my muscles and limbs began to curl. I felt that my body was shutting down. I was freezing. My rare disease, atypical hemolytic uremic syndrome…

I never thought there would be a day when I could sit back and reflect on the things that nearly dying has given me. But after years of struggling through an illness that used to be a death sentence, I can finally say I’m living again.

Note: This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. My nerves began to feel like they were on fire. Stinging and tingling were working their way down from…