Dancing with Rare Disease - a Column by Natalie Sirota

We are all programmed in many ways: by our upbringing, our education, our faith and beliefs, our life experiences, and even our diagnoses. Changing my programming to become an empowered rare disease patient and advocate didn’t happen overnight. Long before I was diagnosed with any rare disease, including…

Connections are important in every aspect of life. Friends, family, social, support, and spiritual networks are crucial to our existence. However, especially in recent years, the way we stay in contact with people has changed dramatically. Much of our communication takes place via the internet — something that can be…

Note: This column describes the author’s own experiences with cannabidiol. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Living with a rare disease looks different for everyone. Many of these conditions involve pain, and the mental health impact can be…

It has been a roller-coaster ride of a year for me, crazy busy and jam-packed with one concern after another — personal matters, family matters, and lots of health problems. Hereditary angioedema (HAE) is my major health diagnosis these days, although I also have diagnoses of chronic Lyme…

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…

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…