I came downstairs last Monday morning, feeling better rested than usual. The end of daylight saving time that weekend had given us an extra hour, and I woke up at 6 a.m. more easily than usual — naturally, even. I put the coffee on, parked myself in front of…
We, the columnists at Bionews, have good editors. They catch typos and grammar mistakes that slip through the computer spell checks and syntax filters. Then they read with a critical eye for clarity of meaning and consistency of style, and prescribe remedies. Finally, they point out patterns or habits…
My sister got the worst haircut last week. It’s actually a good cut, just not the one she asked for. She showed the stylist a selfie taken on a good hair day, and said she only wanted a trim. But when she looked in the mirror for the reveal, she…
Every fall, our religious arts studio exhibits along with half a dozen other specialized vendors at a regional gathering of clergy. In flush times, we distributed gift bags, raffled off prizes, and sponsored happy hour, complete with a classical guitarist providing the entertainment. In lean times, we simply…
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…
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…
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…
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…
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…
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…
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