Jewish Disabilities Awareness, Acceptance, and Inclusion Month is a thing? Who knew? I didn’t until very recently. I’ve been involved in the Jewish community for many years, even before my conversion. But I only recently found out about this special month now that I’ve become more involved in the…
Dancing with Rare Disease - a Column by Natalie Sirota
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…
Illness can be challenging to navigate. When we miss work or school, we may feel the need to share at least some information. However, when an illness becomes chronic, we may feel even more obligated to further explain its impact on our life. In revealing the complications, we probably aren’t…
Note: This column was updated June 13, 2025, to correct that the columnist’s daughter has vascular inflammation, rather than vein swelling. The first time I remember seeing spontaneous swelling was when my firstborn, Aria, was about 6 months old. We’d taken her to a park where her dad…
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…
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…
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…
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