Everyone experiences health limitations at some time or another, whether it’s an injury or something as simple as a cold or flu. However, many of us with rare diseases and other chronic illnesses have to regularly weigh the consequences of our symptoms against our well-being. When I was young and…
Dancing with Rare Disease - a Column by Natalie Sirota
Prodromes, or warning symptoms, are often the first sign of an impending disease flare. They occur in many chronic illnesses, but may vary among patients, even those with the same disease or from the same family. Angioedema is a part of our family. My oldest daughter, Aria, has…
I love my caregiver! I really love my caregiver! My caregiver is my amazing, long-suffering husband, Daryl. I met Daryl via a support group when we were both experiencing the dissolution of our former marriages, essentially making us each other’s support system from the beginning. Neither of us expected the…
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…
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…
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