Columns

One of the questions I never expected to face as a parent is how to explain a chronic illness to a toddler. My son is almost 2 years old, which means he doesn’t understand much about Gaucher disease. He doesn’t know what a genetic disorder is, why I need…

There was a time when getting medical information required a lot more effort. If you had a question about a symptom, a test result, or something your doctor mentioned in passing, you either waited until your next appointment or spent hours searching through websites and forums, trying to piece together…

Most people would never notice anything different about me until they saw the Band-Aid on my hand. It leaves the door open to questions I do not, and often cannot, answer. These questions can leave me feeling exposed before I even have a chance to introduce myself. This is often…

Sometimes it feels strange to write publicly about Gaucher disease because, most days, I don’t feel particularly sick. That’s not something people usually expect to hear from someone with a rare disease. There’s often an assumption that chronic illness has to feel constant and consuming, that it should always…

I was told many years ago that I had an actual expiration date. Put that way, it makes me think of a banana in the grocery store eventually going bad. I know it sounds a bit dark, but that’s what comes to mind. When I was 18 months old, my…

I’ve spent most of my life trying to blend in. As a teenager, and into my early 20s, that’s all I ever really wanted to do. At 18 months old, I was diagnosed with type 3 Gaucher disease and given a life expectancy of 12 years.

There’s something powerful about the simplicity of a good walk. It doesn’t require planning, special equipment, or a burst of motivation. You just step outside and start moving. And somehow, along the way, everything begins to feel a little lighter. Your thoughts settle, your mood shifts, and your body thanks…

When you live with a rare disorder and other chronic conditions, as I do, there’s a certain type of exhaustion that comes from constantly going from doctor to doctor. It’s not just physical exhaustion, but also mental. I start to feel like my whole life revolves around appointments, tests, and…

There are days when Gaucher disease feels like an interruption more than anything else. Not a crisis, and not even a central focus — just something that gets in the way. Life, on the other hand, is very full. I’m a stay-at-home mom to an active toddler while also…

Living with a chronic illness comes with challenges people often expect, such as regular medical testing, monitoring, and the occasional surprise. But one thing I’ve come to appreciate over the years is the value of having the right doctors in your corner. For people with rare conditions like Gaucher…