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…
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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…
I was finally diagnosed with hereditary angioedema (HAE) about two years ago. I have type 3, meaning my C1 esterase inhibitor levels are normal. It wasn’t until my daughter Leah was diagnosed with HAE type 2 in 2019 that I began investigating my own symptoms. Not only do we…
“We don’t really care if they can’t read,” the post on Threads read. “Just make sure they have basic self-help skills.” The sentiment was from a kindergarten teacher trying to calm a worried parent because the parent was concerned their kid hadn’t quite mastered their letters. Soon, other kindergarten and…
Living with hereditary angioedema (HAE) can be interesting at times. There are the standard and obvious symptoms, the most common being internal and external swelling. Then there are the non-swelling symptoms, such as dizziness, hives, nausea, and more. Learning the individual triggers can help us better understand these…
Some people measure their lives in milestones like birthdays, promotions, and weddings. I’ve come to measure mine in disease attacks — the kind that hijack my body, rewrite my plans, and make me feel like a prisoner and stranger in my own skin. But what about the space in between…
Even if I’d had a smartphone, my sister would’ve been way more compelling to watch. Years ago, while my sister, Gina, was on break from medical school, our mom, dad, she, and I had to take a road trip for a family reunion. Because I was still in high school…
Recent Posts
- Rare Disease Week is an opportunity to show that rare is not invisible
- Case highlights rare, life-threatening reaction to common antibiotic
- Dawnzera wins approval in EU as preventive treatment for HAE
- Preparing for an internet or power outage is crucial with angioedema
- A caregiver’s role when facing the ‘boss levels’ of HAE