Dancing with Rare Disease - a Column by Natalie Sirota

Travel plans for an HAE conference include caution

I was superexcited to hear that this year’s US Hereditary Angioedema Association summit is in Baltimore, as that’s my husband’s hometown. His family still lives in that area, and given his mother’s decline, we were planning a trip back east sometime soon anyway. Even though my daughter Leah and…

My family’s personal journey to greater autism awareness

While I cope with hereditary angioedema, Ehlers-Danlos syndrome, and other conditions, I’ve also been touched by a less rare condition that’s not a disease: autism. The first time I learned about autism, I was in college studying for my education degree. I took a psychology course that mentioned…

Are you tired, fatigued, or exhausted? What’s the difference?

Everyone gets tired sometimes. Some of us, especially when we push ourselves, become fatigued. And especially with rare diseases, many of us truly understand exhaustion. In today’s vernacular filled with sarcasm, we frequently hear people, even children, say, “I’m exhausted!” While the words are interchangeable according to Merriam-Webster, terms used…

My daughter’s long journey to a hereditary angioedema diagnosis

Before being diagnosed with hereditary angioedema (HAE) in 2019 at age 17, my adopted daughter, Leah, received several other rare diagnoses, none of which had any real targeted treatment. They caused symptoms, such as migraine, and other systemic reactions. One diagnosis was postural orthostatic tachycardia syndrome, which was…