JOE’S PATIENT STORY
My name is Joe Morden, and I want to share my journey with ADTKD/MUC1.
My story begins in June 1986, when I was two years old. My father, aged 35, unexpectedly went into renal failure. The exact cause of his condition was unclear, and he received a broad diagnosis of nephritis. Despite the uncertainties, he was fortunate enough to receive a kidney transplant from my uncle on February 17, 1987, at the University of Michigan. Remarkably, my dad and uncle are both still in good health and doing great.
I grew up as many American boys grew up in the Midwest in the 90’s. We camped in the woods, rode bikes everywhere, spent summers at the lake and in the fall under the lights on Friday nights. In high school, I was a three-sport athlete and physical fitness became my favorite hobby. After college, I continued to lean into the hobby and really got into working out and “optimizing” my health.
When I turned 30, I underwent routine blook work, which came back perfectly. This gave me confidence in my health and well-being, so I was not anticipating any negative health events. Fast forward to December 28, 2022. I was 38 years old and still in otherwise perfect health when I went in for a routine physical. To my surprise, the tests revealed elevated kidney markers. Follow-up bloodwork confirmed these elevated levels. After consulting four other doctors, a kidney ultrasound showed unclear abnormalities.
Seeking further clarity, we traveled to Mayo Clinic in Rochester, MN. I went through the first rounds of extensive testing and based on some of my markers still being in normal ranges, the consensus was I was most likely ok and didn’t have to worry about anything. Just to be sure, my doctor conducted an Iothalamate test. Unfortunately, that test confirmed there was kidney dysfunction. This triggered another round of testing at Mayo that included a kidney biopsy and genetic testing. These tests suggested a diagnosis of ADTKD. Genetic testing solidified a MUC-1 diagnosis.
Following the diagnosis, my wife and I began searching for information online and came across the Rare Kidney Disease Foundation. I reached out to them, volunteering my marketing expertise, as I own a branding agency. I connected with Richard Nelson, Co-Founder and Chairman of the Foundation. We spent over an hour on the phone discussing our families’ journeys. He told me about the exciting research that was underway and shared that the community is on the cusp of potential therapeutics. This was probably the first time in the process that we felt hope and positivity. In fact, my involvement with RKDF has changed my entire mindset.
As a family, this diagnosis has been very hard. My wife and I have three young children who may also face this diagnosis in the future. The uncertainty and fear that come with this are overwhelming, but we are determined to stay proactive, hopeful, and to help raise awareness.
I want to express my gratitude to all the researchers and medical professionals who are dedicating their lives to finding treatments and, hopefully, a cure for conditions like ADTKD/MUC1. Your work gives families like ours hope and the strength to keep pushing forward.
Thank you for your time and for the important work you do.
