Episode Details

Mike and Tamara are joined by Ellie Kugler, an AKF Ambassador, Kidney Health Coach and bodybuilder who is living with Alport syndrome and lupus. Ellie talks about the difficulty she faced getting a diagnosis and how the relatively new understanding of Alport syndrome—along with misconceptions about who it can affect—played a role. Ellie describes how she started educating herself and others about her disease, participating in clinical trials and talking to legislators on Capitol Hill. She also shares the bittersweet story of her kidney transplant, which was a directed donation from a deceased donor. 

More resources:

• Alport syndrome 
• 'Do the hard work': How AKF Ambassador and bodybuilder Ellie Kugler navigates living with Alport Syndrome 
• Genetic testing and counseling for kidney disease 
• Kidney biopsy 
• Proteinuria (protein in the urine) 
• Hematuria (blood in the urine) 
• AKF Ambassador network 
• Become a Kidney Health Coach