It’s been a part of my life for 21 years

Many who know me know that I live with Cystinuria. It’s been a part of my life for 21 years now. Over that time, I’ve gone through more surgeries, procedures, and doctor visits than I can count, and it still continues. Some days I feel completely fine, and other days everything can change without warning.

This is one of those conditions you usually can’t see. From the outside, everything can look normal, but behind the scenes it affects me in ways most people don’t realize. Physically, the pain can be intense. Mentally and emotionally, it’s draining. The constant unknown, when the next stone will come, how severe it will be, or what the next step is, can wear you down over time.

There’s also frustration that comes with it. Answers aren’t always clear. Treatments don’t always work the way you hope, and living with something that doesn’t have a cure yet can feel overwhelming at times.

Over the years, I’ve had to learn how to be my own advocate. I’ve had to speak up, ask questions, push for answers, and trust myself when something doesn’t feel right. Navigating this condition isn’t always simple, and being involved in my care has become a necessity.

At the same time, I’m also a mom. No matter what I’m dealing with, I still show up for my kids. There are days it’s harder than others, but they are a big part of why I keep pushing forward. They give me strength on the days I feel worn down and remind me why I keep fighting through it all.

But even with everything, I keep going. Like so many others living with this condition, I hold onto hope that one day there will be better treatments, better answers, and ultimately a cure for genetic disorders like this

People often say kidney stones are some of the worst pain a person can experience. Now imagine dealing with them over and over again, sometimes multiple times in a month. That’s the reality of living with Cystinuria.

– Sam