RKD & Me Movement Brings Much Needed Spotlight to Life with Rare Kidney Disease

“Your?compassion and understanding will deepen. You will have a new perspective on life and learn to never pass judgment on others because you are unaware of their circumstances. Share your story, turn a mess into a message and a test into testimony.”

“Share?your story.” “A?test into testimony.” The words practically leapt off the page as I?combed through letters written by people living with rare kidney disease (RKD) to their younger selves. Taken as a whole, the letters were deeply?honest. They were also profoundly?effective in portraying the?realities and nuances of living with rare kidney disease. With?poetic expression and emotion, this particular?letter summed?up why these messages needed?to be written – and why we must listen to?them.??

The?letters are part of a new movement?launched?today by Travere in partnership with NephCure Kidney?International and IgA Nephropathy Foundation to bring visibility to RKD,?empower?the newly diagnosed, educate the public, and give those living with rare kidney disease a common space to share their stories and experiences. The movement is called RKD & Me.

In?a world where millions of people live with chronic kidney disease, commonly known as CKD,?RKD draws little?attention.?Due to low public awareness, people living with rare kidney disease can face challenges in getting diagnosed and finding support.?

RKD & Me?stems?from a nationwide listening tour during which people living with rare kidney disease and caregivers shared?what it’s like to live with RKD,?recounting their experiences, and emphasizing the need for RKD to be delineated from other, more common kidney diseases. They read letters?they?had penned to their younger selves.

For some, this was the first time they felt heard. The letters they shared were incredibly?personal; they?showed the many ways?RKD intersects with everyday life, from parenting to careers to individual?passions. The?revelations are striking – and so are the individual moments of inspiration and fortitude. As one of them reflected, “You’re?stronger than you think.” Words?of wisdom shine?out from these letter writers. As several?of them advised, “Give?yourself grace.”?

Some?powerful moments of the listening tour are brought to life in this moving video and cement the rationale for why now?is?the?time for RKD & Me.

My hope is that people living with RKD will experience the?profound triumph of finding that they?are not alone, that their individual experiences?are highlighted into collective testimony,?and that RKD can be better known and understood.??

For me personally, this campaign beautifully represents the power of coming together as a community to tackle the challenges of RKD and how we can work together to build a better future that is hopeful.

Read their?powerful stories by visiting RKDandMe.com or?follow #RKDandMe on social media to learn more.