Dancing with Rare Disease - a Column by Natalie Sirota

I started my journey with Bionews, the parent company of this website, many years ago by signing up for a newsletter when my daughter was diagnosed with hereditary angioedema (HAE). A couple years ago, I replied to an inquiry asking for volunteers to film a video explaining the…

If you’ve been reading my columns over the summer, you’ll know it’s been difficult for me lately. To say I have had some challenges would be an understatement. I’ve faced new diagnoses and tried new medications for my hereditary angioedema. Some have helped, but others actually made…

As I’ve mentioned before, I have several diagnoses, some considered rare and others not so much. My first big one was Lyme disease. Frankly, I’ve never felt a return to “normal” since having it, and subsequently it was deemed chronic. I also have Ehlers-Danlos syndrome, mast cell activation syndrome,…

Hereditary angioedema (HAE) is an interesting disease. My personal experience is that it can be very unpredictable. I’ve experienced a plethora of unusual, seemingly random, and unexplained symptoms throughout my life. Since childhood, I’ve had unexplained rashes, respiratory issues, and gastrointestinal complaints. Looking back, I think they might’ve…

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…