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For New Jersey native Amanda Skeens, life has always been about connection to her family, her passions, and her resilience. Whether cheering on her beloved New York Rangers or spending hours building elaborate LEGO sets, Amanda knows how to find joy in the small things.
Her joy was tested in 2007, when she was diagnosed with IgA nephropathy, a rare kidney disease (RKD) discovered through a routine physical from her urinalysis.
“I never had any visible or physical symptoms of anything being wrong,” Skeens stated. “Suddenly, my being adopted had me thinking that I have no medical history to look back on.”
For years, Amanda managed her disease with limited treatment options. In 2018, stress from work triggered a dangerous kidney flare-up that caused her protein levels to spike dramatically. When her doctor advised that she begin transplant evaluation, it was a difficult reality to face.
“I knew I would get to this point eventually,” she said. “But I was declining so rapidly that it was hard to process this whole new world.”
Determined to take charge of her care, Amanda switched nephrologists and found the support she needed. “My new nephrologist was fabulous from day one,” she said. “He told me he would help delay my transplant, and he did, for almost five years.”
In December 2024, Amanda received the call she had been preparing for — she was ready for a kidney transplant. Her donor would be her cousin, Joe, who had selflessly volunteered to be tested.
Today, nearly one-year post-transplant, Amanda and Joe are both thriving. “He jokes that he’s doing everything he normally would with ‘only one kidney,’” she said. “But I will forever be indebted to him for this generous gift of a second chance at life.”
As she recovered, Amanda leaned on her favorite hobby, which was building LEGO sets to keep her mind and spirit strong. She bought a massive set with more than 3,000 pieces to work on after surgery.
“I use LEGO as a fun way to relax and decompress,” said Amanda. “While doing LEGO, I listen to music, and I am super focused on building and checking out of the world for hours on end. LEGO has been a great escape for my mental health because this is what I find to be a fun and light-hearted activity to do.”
Amanda’s journey has taught her the power of self-advocacy and mental resilience.
“Looking back, I feel like my diagnosis did change the way I looked at my life, because I never let this determine who I am as a person,” she said. “My biggest advice for other RKD patients is that you must be your own advocate and arm yourself with the knowledge that is available to all of us and bring it forward to your nephrologist.”
To read more stories, just like Amanda’s, click here or to help continue to raise awareness about rare kidney disease, share your story with NephCure here.
