Columns

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…

When stealing $150 million from some of the world’s most famous casinos, Danny Ocean knew the plan needed to be meticulous. In 2001’s iteration of “Ocean’s Eleven,” George Clooney’s character enacts revenge on one of his enemies by robbing the Bellagio, the Mirage, and the MGM Grand in Las Vegas.

A new year brings a familiar question: What now? For those of us living with a rare disease such as angioedema, the answer is rarely simple. We don’t get the luxury of clean starts or easy resolutions. What we do carry forward is knowledge. About our bodies, about the…

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…

Every adventure or fighter video game has the ultimate level. It doesn’t matter if it’s something as complicated as Isshin in Sekiro, as pattern-based as facing off with Mike Tyson in Punch-Out!!, or as timing-intensive as defeating Bowser in Super Mario Bros.; video games with boss levels test skill, persistence,…

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…

For some people, advocacy is a choice — a hobby, calling, or passion project they pick up when they have the time, energy, or interest. But for those of us living with rare diseases, chronic illnesses, and bodies that don’t follow the rules, advocacy becomes something entirely different. It becomes…

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…