Our family’s first experience at a U.S. Hereditary Angioedema Association (HAEA) conference was amazing! I must admit that I’m usually a bit wary of large organizations with major sponsorships, just because I’m sometimes skeptical about potential biases. However, I was pleasantly surprised — and thrilled — by my experience at…
Confession time: I love food, especially sweets! They’re not good for me, though, or probably most people. Living with hereditary angioedema (HAE), as I do, is difficult, and having to watch what I eat is an added challenge. The 1970s was the boom era for convenience, and I was…
I was diagnosed with hereditary angioedema (HAE) in 2023. I have what is sometimes called type 3, or HAE with normal C1 levels. I take a daily maintenance medication, Orladeyo (berotralstat), which has been amazing from the first trial dose. I also have a backup rescue medication…
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…
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…
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