Dancing with Rare Disease - a Column by Natalie Sirota

Way back in middle school, I had my first big travel experience when my parents took us to Hawaii to celebrate their 25th anniversary. Then, in high school, I went on a class trip to England, and my love for travel was solidified. After being a stay-at-home mom of four…

Our family has found immense comfort and support within the rare disease community. While many of our health conditions are inherited, others, such as my chronic Lyme disease and long COVID-19, were acquired. All of them, though, can be classified as invisible disabilities, including hereditary angioedema (HAE). Although my…

Last in a series. Read part one. In the first part of this series, I shared how I compiled all of my daughter Leah’s personal health information (PHI) on the road to her diagnoses. Over the years, that morphed into keeping track of my family’s data as well. We…

First in a series. While many doctors and healthcare systems now use digital patient portals, I find value in maintaining my family’s personal health information (PHI) independently. Keeping a physical database of our medical information is important, especially for those of us with rare and chronic illnesses. It can be…

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…