The Power of Purpose – a reflection on World Kidney Day

“In?one second, everything?comes to?a halt.”??-?Sharron, living with FSGS

Sharron’s?statement?about the?day she learned she had FSGS, a rare kidney disease, may?resonate with many who have received a life-altering diagnosis. Everything stops, and then the questions pour in. How do I navigate in this new world? Where do I turn for answers? What does this mean for the future, and my family’s future???

As?we mark World Kidney Day, it is important to use this day to raise awareness of rare kidney diseases and the need for research, earlier diagnoses, and innovative new treatments. I also see it as an opportunity to share one important truth: no one living with a rare disease needs to face it alone. Organizations such as Kindness for Kidneys, started by Sharron, and others like?NephCure Kidney?International,?IgA Nephropathy Foundation,?and so many more are helping to ensure people living with rare and chronic kidney disease know there is a?whole community here to support them.??

Sharron’s?story,?which you can view here, is?a powerful reminder of?this.?When?her FSGS?progressed to end-stage kidney disease,?Sharron’s sister?Shonté was?in a difficult place in?life, depressed?and feeling as if she lacked purpose. Upon?learning her?sister needed a new kidney, Shonté?didn’t?hesitate to?be tested – and was not surprised when she turned out to be a perfect match.?

Today?Sharron feels like she has “a?new lease on life”?that?she does?not take it for granted – it’s why she feels it is so important to tell her story. And?as much as I relate to Sharron’s story as a rare disease survivor,?I also relate to Shonté‘s experience of?finding her purpose.??

This?World Kidney Day, I’m doubling down on my purpose to help?people living with rare disease find?answers, to give people more?treatment?options,?and to provide hope for the future.