When we’re living with a rare or chronic health condition, it can be hard to find a medical professional who believes us, much less follow through with the long and tedious path to a diagnosis. My daughter Leah and I spent years traveling all over the country in search of…
Dancing with Rare Disease - a Column by Natalie Sirota
I was finally diagnosed with hereditary angioedema (HAE) about two years ago. I have type 3, meaning my C1 esterase inhibitor levels are normal. It wasn’t until my daughter Leah was diagnosed with HAE type 2 in 2019 that I began investigating my own symptoms. Not only do we…
Living with hereditary angioedema (HAE) can be interesting at times. There are the standard and obvious symptoms, the most common being internal and external swelling. Then there are the non-swelling symptoms, such as dizziness, hives, nausea, and more. Learning the individual triggers can help us better understand these…
My adopted daughter, Leah, was diagnosed with hereditary angioedema in 2019. My son Dorian and I were subsequently diagnosed with the same condition, and my firstborn daughter, Aria, has acute allergic angioedema. Leah has other rare diagnoses, including an ultrarare genetic disease, so it’s safe to say our…
The first person in our family to be diagnosed with hereditary angioedema (HAE) was our youngest, adopted daughter, Leah, who’d been seriously ill for years. Genetic tests have since confirmed that she was born with several conditions; they became extremely pronounced once she reached puberty. Leah endured recurrent upper…
Over the past eight years, my immediate family has received four angioedema diagnoses. First was my eldest daughter, Aria, who was diagnosed with allergic angioedema in 2018. Then came my adopted daughter, Leah, the following year, who has type 2 hereditary angioedema (HAE). I received a type 3 diagnosis,…
When I was younger and raising my children — years before most of my diagnoses, but while I was already living with symptoms — my morning routine was basically to hit the ground running. That has changed dramatically. Not only are my children all adults and self-sufficient, but as I…
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…
Recent Posts
- Rare HAE diagnosis explains years of severe abdominal pain in man
- I forget that my daughter with HAE can also face common illness
- Dawnzera reduces HAE attacks by over 80% over 4 years, per final study data
- It’s difficult to encounter people who don’t understand invisible disability
- FDA puts potentially long-acting, preventive drug for HAE on fast track