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…
Dancing with Rare Disease - a Column by Natalie Sirota
Being a parent is never easy. I should know, as I have eight children. I have four biological children from my first marriage, three stepchildren from my second marriage, and one adopted daughter. Two of my bio kids, my adopted daughter, and I all live with angioedema. Being a…
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…
Four members of my immediate family have multiple types of angioedema. Three of us have hereditary angioedema (HAE) and require only maintenance medication to treat it, and we rarely use rescue medications for breakthrough attacks. When a symptom crops up, we take time to do a self-analysis…
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…
“So what are your symptoms?” is always the doctor’s first question. But which of my symptoms stem from hereditary angioedema (HAE), and which are caused by my many other health conditions? It took most of my life to get diagnosed with HAE. As a kid, I had horrible reactions…
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…
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…
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