Dancing with Rare Disease - a Column by Natalie Sirota

How do you spell holidays? For me, it’s S-T-R-E-S-S!

For many, holidays are difficult. Family gatherings, whether you experience difficulty with the social dynamics, political differences, or touchy-feely personal-space invaders, can be overwhelming. That’s especially true for those of us who have the complications of rare disease atop everything else. Most holiday gatherings involve travel as well. Whether you’re…

A mother and daughter with a hereditary angioedema diagnosis

What’s happening? Why can’t I fit into these pants? I just wore them last week. The waistband is so tight it’s painful! I ask my family, “Can you see how swollen I am?” I had no idea what was happening to me, other than my sense that I looked fine…

Come dancing with me as I share our family’s rare disease journey

Hello, and welcome to my column. My name is Natalie, and I’m a 59-year-old rare disease patient, along with several of my family members. This column will focus on my most recent rare disease diagnosis: hereditary angioedema (HAE). I named my column “Dancing with Rare Disease” because in addition…