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For some people, advocacy is a choice — a hobby, calling, or passion project they pick up when they have the time, energy, or interest. But for those of us living with rare diseases, chronic illnesses, and bodies that don’t follow the rules, advocacy becomes something entirely different. It becomes…

Everyone experiences health limitations at some time or another, whether it’s an injury or something as simple as a cold or flu. However, many of us with rare diseases and other chronic illnesses have to regularly weigh the consequences of our symptoms against our well-being. When I was young and…

There was a time when showing up meant physically being there — at the meeting, the appointment, the event, the moment. I used to equate my physical presence with my worth. If I couldn’t show up in person, I felt like I was falling short. Chronic illness has a way…

In “The Butterfly Effect,” the character played by Ashton Kutcher learns that attempting to avoid negative situations doesn’t necessarily lead to better outcomes. Dissatisfied with the circumstances in his life, he discovers that when he reads his childhood journals, he can travel back in time and inhabit his younger self’s…

Prodromes, or warning symptoms, are often the first sign of an impending disease flare. They occur in many chronic illnesses, but may vary among patients, even those with the same disease or from the same family. Angioedema is a part of our family. My oldest daughter, Aria, has…

I love my caregiver! I really love my caregiver! My caregiver is my amazing, long-suffering husband, Daryl. I met Daryl via a support group when we were both experiencing the dissolution of our former marriages, essentially making us each other’s support system from the beginning. Neither of us expected the…

In the seventh season of the longest-running U.S. animated series, “The Simpsons,” Homer’s bosses at the town nuclear plant attempt to implement a mandatory exercise program to promote a healthier lifestyle among the employees. As any casual viewer of the show might predict, Homer, a character known for his knack…

When we’re living with a rare or chronic health condition, it can be hard to find a medical professional who believes us, much less follow through with the long and tedious path to a diagnosis. My daughter Leah and I spent years traveling all over the country in search of…

Living with hereditary angioedema (HAE) already feels like walking a tightrope — a single misstep, one trigger, can be a flare away from losing your balance. When you add womanhood, roller-coaster hormones, and perimenopause into the mix, that tightrope suddenly feels much thinner. For “typical” women, the hormone estrogen…

Years before my mother passed away, she shared with me the “secret” recipe for her savory Thanksgiving dressing. Although the recipe has multiple steps, it’s very simple. Like most traditional African American recipes passed down through families, the bulk of it doesn’t use exact measurements. There is one step that…