I used to measure my daughter’s days in small, ordinary ways. Our house runs on routines, calendars, and controlled chaos, so I’d measure days by…
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I’ve always believed in the concept of “mind over matter” — the idea that a person’s thoughts, feelings, and beliefs can somehow override and maybe…
Rare and chronic diseases aren’t always visible. Sometimes, it can be hard for friends and family to understand that you’re very sick if you’re not…
Becoming sick is an inconvenience for anyone. Feeling unwell means not being able to complete tasks, missing work or school, and possibly taking medications that…
While most of the U.S. was battling snow and ice recently, I was out on our dock in Florida, soaking up the sun, my skin…
Blood transfusions are a remarkable medical intervention that has saved my life more than once. When I hear someone “needs a blood transfusion,” I immediately…
Those living with rare and chronic illnesses may often hear the term “flare.” But what does it mean? A disease flare-up is a temporary escalation…
I start each day with a floor-to-ceiling view of the lake outside our house in Florida. On perfect mornings, it is still and reflects the…
Living with rare and chronic illnesses is one of the hardest things I’ve ever dealt with. Because I have five different diseases, it can be…
Living with a rare disease often means feeling unseen and alone, even when surrounded by supportive family, friends, and a medical team. While they certainly…
