The invisible moments that people living with rare kidney disease (RKD) see clearly

(BPT) – Meet Amanda, a New Jersey resident and lifelong hockey fan who has a passion for volunteering and advocacy that – almost – parallels her love for the New York Rangers. Much of Amanda’s day-to-day looks like that of other people, but what many don’t know about Amanda is that she has been living with IgA nephropathy, a form of rare kidney disease (RKD), for more than 15 years.

RKD can present with no symptoms or a range of unique symptoms that are not always visible to others. So, while people living with RKD may appear outwardly healthy, young and active, they may be coping daily with the challenges of managing their disease.

Amanda said, ‘You don’t see my RKD and how it affects me just by looking at me,’ and as a result, people often do not realize the different ways her RKD impacts her daily life. Amanda supports others with IgA nephropathy by sharing her own story to educate the public and help create more understanding of what it is like to live with RKD.

Here are two things that people living with RKD face that may be invisible to others:

1. Rare kidney disease intersects with everyday life, but expectation-setting helps with balance

Maintaining a balance between medical needs and life’s other commitments is a juggling act for people living with RKD – and missed workdays, lab visits, special meal planning, dietary restrictions and an ever-changing appointment schedule can present unique challenges.

Even the seemingly simple task of choosing to attend social gatherings and group dinners may require careful consideration. ‘There have been times I have decided to skip social events because I didn’t want to inconvenience the hosts with my special RKD dietary needs,’ said Amanda.

However, Amanda has discovered that finding balance is possible by setting realistic expectations and practicing open communication. ‘I’ve learned to set clear boundaries in my personal and professional lives to accommodate my RKD. By finding a supportive work environment and being open with my loved ones, I’ve been able to prioritize my health without sacrificing other important areas of my life,’ she said.

2. Living with a rare form of a widespread condition can be isolating, but community can be a shining North Star

Due to the low public awareness of rare kidney disease, people living with RKD can face challenges in getting diagnosed and finding support. Furthermore, the significant impact that RKD has on people’s lives is frequently not recognized by others.

Throughout her journey, Amanda has found immense purpose in advocating for herself and others living with RKD. She actively volunteers as a leader for the IgA Nephropathy Foundation supporting people diagnosed with IgA nephropathy. She is also helping bring visibility to rare kidney disease through RKD & Me, a campaign co-created by the IgA Nephropathy Foundation, NephCure, and Travere Therapeutics that aims to drive awareness of rare kidney disease through the real stories of people living with RKD, told through letters written to their younger selves.

Sharing her story with the public and connecting with others in the RKD community has been inspiring for Amanda. ‘I want people living with RKD and their loved ones to know they are not alone. You are stronger than you’ll ever know,’ she said.

If you have rare kidney disease or want to learn more about the experiences of people living with RKD, visit RKDandMe.com or follow #RKDandMe on social media.