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Dealing with a rare disease diagnosis is often referred to as a journey. It may be toward a cure or to new ways of coping. It may include actual travel to meet with specialists, receive experimental treatment, or participate in clinical trials. Or it may preclude physical excursions, as…

We have been hearing a lot lately about essential workers. There is much praise for the front-line heroes who protect and save lives. You know the ones: the doctors, nurses, and EMTs. They are the ones who wear spiffy uniforms with official badges and command authority and respect due…

It is a familiar adage that those who give care often neglect to take care of themselves. They may feel, in comparison to their charges, that their needs are smaller or less pressing. Or, after long hours of tending to the needs of others, they may simply lack time…

Everyone likes the idea of a winning lottery ticket, a get-rich-quick scheme, or a get-out-of-jail-free card. But most of us recognize that these concepts are typically fantasies at best and frauds at worst. We may play along, buying a raffle ticket for a good cause or risking a buck or…

Because of my husband’s rare disease, I have spent significant time and effort advocating for his care. Since the onset of his aHUS, his job has been to follow doctors’ orders. Mine is to question them — and those of the insurance companies, pharmacists, and others. The role…

Whenever my husband, Ronald, sees me portioning out the pills for the week, he apologizes. “I’m sorry, I didn’t mean for you to have to do all this,” he says. It’s the same thing he says when he finds me sorting out paperwork and bills for the business. He is…

It’s that time of year when we resolve to improve ourselves and our lives. Ubiquitous articles and television segments offer advice to the masses as we embark on an annual fresh start. Everyone is encouraged to strive for perfection, get in shape, make time for themselves, get organized, take…

Receiving a rare disease diagnosis is not only a life-changing event, it is a life-dividing moment. Suddenly, all the details of life fall into one of two categories: before and after. Every memory and dream, all the old routines and new challenges are forever informed by that experience. It…

When I first became my husband’s caregiver on his release from a three-week critical care hospitalization, it was a full-time commitment. Still, I thought I would be able to manage some of my job responsibilities part time while working from home. I had always struggled to juggle paperwork and…

The truth is, my husband is a motorhead. Like most of the rest of the world, I think Ronald is a great artist, divinely inspired to create delicate images of profound beauty. But he and my mechanic brother know he only does that to fund his passion for fast…