Columns

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…

“How are our lives going?” John asks. “Are we rich?” Ben immediately follows. In a hilarious prerecorded video for “Saturday Night Live,” comedy trio Please Don’t Destroy presents a scenario in which future Ben, John, and Martin come to deliver a grave warning to the present-day troupe about the end…

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,…

Being dually eligible for both Medicare and Medicaid seems like the ultimate healthcare safety net. Two insurance programs, more coverage, and more protection sounds fantastic. But in reality, for many people living with rare and chronic diseases, dual eligibility can feel less like a safety net and more like being…

During the 1992-93 AFC Wild Card playoff game, the Houston Oilers faced off against the Buffalo Bills. In a twist on irony, the game was a rematch of that particular season’s ender, which the Oilers won. Adding to the mounting anxiety for Bills fans and players, their starting quarterback, Jim…

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…

For lack of a better phrase, and at the risk of sounding cliché, a summer job for a teenager is a time-honored tradition. It’s such a well-known trope that shows like “Saved by the Bell,” “The O. C.,” and “Stranger Things” have entire seasons dedicated to following teenagers as they…