“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…

Pain shoots through my jaw and into my sinuses and eyes. The ache throbs to the rhythm of my heart like a drum getting louder and louder. Decay forces me to cover my mouth when I laugh. I never lean in close to a friend to whisper because of bad…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. Most of us go to great lengths to lessen or get rid of pain, whether we’re using over-the-counter (OTC) or prescription medications, anesthesia, nerve blocks, acupuncture, meditation, or other methods. But what do we…

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…

A rare disease diagnosis can be scary, overwhelming, and life-changing, often bringing unexpected health complications and comorbidities. During my time with a rare disease, I’ve learned that I have a proclivity for medical drama. In September 2020, I nearly died when COVID-19 complications triggered atypical hemolytic…

Escaping death doesn’t come easily. While my severe health issues resulted in emergency medical care and a rare disease diagnosis, they also left scars — physical and emotional. I’d been unwell for much of 2020. My whole family had gotten COVID-19 in March, so when I started developing random…