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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…

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…

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…

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…

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…

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 the value of little things and great thoughtfulness. While my husband, Ronald, struggled to simply live,…

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 millions. They wear designer clothes and their hair is perfect. We often assume these beautiful people…

Medications come with warning labels. Maybe rare diseases should, too. Warning: Atypical hemolytic uremic syndrome may cause secrecy in patients and caregivers. aHUS is a rare and life-threatening condition, and there are many reasons not to share a diagnosis or prognosis. Within the family, patients may want to shield loved…

The Serenity Prayer Most people know about the Serenity Prayer. It is a favorite among people with alcohol or drug addictions or those struggling to stop blaming themselves or others for the happenstance of life. Many people have memorized it: “God, grant me the serenity to accept the things…

My husband’s general practitioner, hematologist, and nephrologist each care for the same number of patients with aHUS as I do: one. However, these doctors all handle a few hundred other cases with various ailments and concerns, whereas this is the entirety of my practice. Therefore, I am a specialist. I…