Meet the Cystinuria Connect mentors*
Our Cystinuria Connect mentors have come a long way since their first cystine stones. Through countless learning experiences, they truly understand the highs and lows of living with cystinuria. Connect with them to hear how they manage cystinuria; partner with doctors; and live active/productive lives.
This is a disease that I have to deal with every single day for the rest of my life, and the way I see it, I have two options. I can either let it control me and dictate my life. Or I can be my own advocate and be in control of my own life and this disease.
It's been a long, hard journey with cystinuria—one that I fought on my own for a very long time…. And now, I'm learning to let go, and let my loved ones be there for me so that I can live my best life.
There have been a lot of uncertainties and fears upon receiving my daughter’s cystinuria diagnosis. Some years were pretty tough. She is doing very well with her management of the disease now. Although there is always fear of future debilitations, I have learned to shelve those stressful thoughts as best I can.
Living with cystinuria can be frustrating. Sometimes it leaves me feeling completely helpless, but I need to make the best of the hand I was dealt. I’ve chosen to enjoy the good days and deal with the bad when they come. I have to make the most of the life I was given.
I’ve always been told if you’re going to do something, do it well. Confronting cystinuria is no exception. Having a positive attitude, the right treatment plan, and a great urologist can make this condition manageable.
*Individual patient experiences. Treatment information should be discussed with your healthcare provider.