Dancing with Rare Disease - a Column by Natalie Sirota

Note: This column describes the author’s own experiences with Andembry (garadacimab-gxii) and other medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last month, I shared that I was overwhelmed when my immunologist suggested I try a new…

Living with a rare disease isn’t necessarily something I’m proud of. However, I do take great pride in standing up for the rights of those of us who live with disabilities. Speaking out through my column is one way I can advocate. Disabilities are much more complex than many people…

As a person of faith, I was excited to learn that June 21 is not only Father’s Day, but also World Peace and Prayer Day. I am a huge proponent of peace, love, and prayer. Whether you see prayer as personal meditation, corporate affirmation, or just communion with greater consciousness,…

Change happens, and it can be good, bad, or neutral. How we deal with it is the real challenge. Having a family like mine that deals with multiple rare diseases means constantly confronting many challenges. When one of the rare diseases in our family is angioedema, the challenges associated…

When my family first moved to Colorado almost 20 years ago, I was surprised to see snow in early October, and even on Mother’s Day in the spring. It was especially odd considering we don’t live in the mountains, and the summers here are so warm. But this year, we…

I have always been rather active. When I was young, one of my favorite pastimes was spending hours exploring the woods near my childhood home. I also loved running through the fields of my grandparents’ farm, climbing trees, and playing in the creek with my cousins. Ah, the carefree days…

Several members of my family live with angioedema. My eldest daughter, Aria, has allergic angioedema; my son Dorian has hereditary angioedema (HAE) type 1; my adopted daughter, Leah, has HAE type 2; and I have HAE type 3, or HAE with normal C1-INH. On top of angioedema, we…

I was recently asked how hereditary angioedema (HAE) affects me mentally and emotionally. That’s a big question! HAE affects everything that contributes to my mental health — my family, my work and social relationships, my physical health and illnesses (both chronic and acute), stress, diet, exercise, rest, and my…

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…