Columns

My edema management is becoming increasingly difficult

A dull but fierce ache swept through my left leg like wildfire. I was sound asleep until a charley horse ripped through my calf muscle and woke me. The pain was so intense that I gasped and ripped away the blankets to assess my leg. My fiancé and I watched…

On the 5-year anniversary of my diagnosis, I’m grateful to be alive

Typically, when someone wishes you a happy anniversary, it’s to celebrate another year in a relationship, marriage, or even a career. It’s a time to reflect on all the effort put in, the adventures experienced, and the achievements made during that time. This week marks an important five-year anniversary for…

My favorite tips to make life with aHUS a little easier

Being chronically ill and disabled long before I turned 40 is not how I expected my life to unfold. Rare diseases, permanent organ damage, and a multitude of comorbidities have forever changed my future. While it’s no secret that there are negative aspects to living with a rare, chronic illness,…

Disappointment and gratitude can go hand in hand with aHUS

This column describes the author’s own experiences with Soliris (eculizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Dialysis, blood transfusions, muscle loss, isolation, loss of appetite, infusions with damaging side effects, and the hallway echoes of the slow…

How I avoid getting sick with aHUS and two young children

Fifteen milliliters of children’s ibuprofen, a 75-count pack of Clorox disinfecting wipes, boxes of Kleenex with aloe, a large can of Lysol disinfectant spray, filled hand-soap dispensers at each sink, an empty trash can, rubber gloves, and antibacterial dish soap. That all may sound like an advertisement for a drugstore,…

A simple sandwich offered new hope when I needed it most

It was the first time in four weeks I’d been hungry — actually, truly hungry. My mouth watered at the thought of a fresh, hot breakfast. During my stay in the intensive care unit (ICU), I’d lost 20 pounds and a great deal of muscle mass and was growing weaker…

Losing my identity after I had to stop working due to aHUS

Employment: Dare I say it’s a necessary evil? American culture is very career-focused. Everything costs money, which most people earn by working. And with the cost of living creeping higher each year, many are working more than ever just to make ends meet. But what happens when you suddenly become…