Author Archives: Annie Dixon

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 encourage her family members to get tested for the genetic marker. Suddenly, I was promoted from…

A Book Club for the Bedridden

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 attraction were hours of highways and byways. Radio was local then and faded quickly as the…

Let Me Sleep on It

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 details of our days. But I also have noticed that it has had a profound effect…

What Did We Do to Deserve This?

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 half, nothing is new. Neither of us has gone anywhere, met anyone, or done much of…

What Are the Chances?

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 he was diagnosed with aHUS five years ago, the doctor told us there were approximately 625…

In Search of a Special Kind of General Practitioner

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 with a GP, while striving to live the healthiest life possible. And the physician needs to…

Should We Stay Or Should We Go Now?

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 them on actual radios, not phones. Fast-forward 40 years: Johnny Rotten’s wife has dementia, and…

Appreciating Our Still Life With Houseplants

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 days were measured by watching light bricks fade to dark. He noted with mild interest when…

Our Good Doctor’s Bold Statements

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 was coming. It’s a good thing for his career, and we are happy for him. He…

I Miss Him While He’s Here

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 of life and death, love and loneliness. These concepts are presented as simply and distinctly as…