My Advice on Genetic Testing, for What It’s Worth
A few weeks ago, I received a question about a column in which I mentioned genetic testing. A woman with atypical hemolytic uremic syndrome (aHUS) asked for my advice about whether she should…
When I took this column on a year ago, I wasn’t sure I would have enough to write about each week. Once one learns to say “atypical hemolytic uremic syndrome,” how much is there…
Read moreA few weeks ago, I received a question about a column in which I mentioned genetic testing. A woman with atypical hemolytic uremic syndrome (aHUS) asked for my advice about whether she should…
My husband, Ronald, and I hit the road years ago, chasing work, vistas — anything but another day in the office. Exciting? Sometimes. But in between the last sales meeting and the next roadside…
As the spouse and caregiver of someone with atypical hemolytic uremic syndrome (aHUS), I am always conscious of the fact that living with a rare disease has affected both our overall lifestyle and the…
Our phone call was winding down. “So, what else is new?” Mom and I asked each other. We used to have answers to this question. News, even. But for the past year and a…
Every happy wife thinks her husband is one in a million. However, I happen to know that mine is one in half a million. That’s not my opinion; it’s a medical fact. When…
Living with a rare disease creates a need for medical specialists. But a good general practitioner plays an important role, too. Rather than simple checkups, a patient with a chronic condition needs reality checks…
I am old enough to remember when punk rock first aired on the alternative radio station in Washington, D.C. In fact, I am so old, all stations were local then, and we listened to…
A brown masonry wall jutted out at a 90-degree angle just past the window in our hospital room. From his bedridden perspective, it was all my husband could see when he looked out. His…
We got the official letter last week. The brilliant nephrologist who saved my husband’s life will no longer see patients at the local office. He told us at the last appointment that this…
Almost a century has passed since the Carter Family recorded their classic country song, “Will You Miss Me When I’m Gone?” Like any good Appalachian ballad, it is an ominous and mournful melody…
Spoiler alert: It is not flowers and balloons. A couple of weeks into our stint in the critical care unit due to my husband’s aHUS, a surprise visit from my sister showed me…
Celebrities seem to have it all. Their lives look so easy and enviable. We watch them sing, dance, act, and then share a laugh with late-night talk-show hosts. Their albums, shows, and movies make…
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