Columns

“But the most important rule … never feed him after midnight.” That was part of the ominous and infamous instructions for owning a mogwai in the 1984 thriller “Gremlins.” In the movie, Billy receives a pet for Christmas that comes with confusing and complicated verbal instructions. The cute little creature,…

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…

I did not become an advocate because I felt powerful. I became one because I had felt powerless too many times. For years, I sat in exam rooms without knowing I could question what I was being told. I accepted that unexplained swelling, severe abdominal attacks, hospitalizations, and no…

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…

Many years ago, my family got word that a new organization was putting on a street festival in the city. Because it fell on a day when everyone was free, we planned to attend solely for the spectacular fireworks show promised at the end. With about 10 minutes to spare…

We are taught that grief is a mountain. A journey we climb. A path with a beginning, a middle, and an end. Society loves to hand us the map of the five stages of grief — a neat, organized progression where we move through denial, anger, bargaining, depression, and eventually…