'Do the hard work': How AKF Ambassador and bodybuilder Ellie Kugler navigates living with Alport Syndrome

Elizabeth "Ellie" Kugler once had a promising career in surety bonds. She used to be very sociable and spent lots of time with her husband, family and friends, and she was passionate about bodybuilding, which she said changed her life and gave her a sense of discipline. "I had a very good life," Ellie said, reflecting on those days. Although she was often sick, she said her life used to feel "freer" than it feels now. 

As a child, Ellie had frequent kidney infections and kidney stones, as well as blood and protein in her urine. Doctors were unsure why this was the case, so Ellie spent many years in the dark as to what was causing her symptoms. Still, she didn't let her kidney disease stop her from doing the things she loved.

Then one day in January 2020, Ellie wound up in the emergency room. "My kidney function was at 30% and my blood pressure was through the roof," she said. But even with these symptoms, Ellie wasn't overly concerned. "I told [the doctors], 'Oh, I'm hypertensive, and I have certain kidney issues, but it's nothing to worry about. My doctors have been telling me that for my entire life.'" 

However, after two days in the hospital turned into three days, doctors came to Ellie with life-changing news: her kidneys were failing, and she would need to go on dialysis or receive a transplant in the not-too-distant future. "[They said] 'this is how your life is going to go, and these are all the changes we're going to make, and we need to figure out why [this is happening to you],'" she said.

Ellie was shocked. "I was trying to live life as normal, just taking care of myself, " she said.  Although she was able to get through one bodybuilding competition, she was unable to take part in any further competitions. "My body just couldn't keep up," she said.

In 2021, Ellie was diagnosed with Alport syndrome, a genetic disease that primarily affects the kidneys but can also affect other organs. Despite Alport syndrome being genetic, neither of Ellie's parents have any issues with their kidneys. "The closest link I can think of is my mother's mom, so my grandmother on my mom's side," she said. "She struggled a lot with her kidneys, and she had basically no kidney function by the end [of her life]." Seeking answers, Ellie sought genetic testing, which revealed that she could be the first person in her family line to have Alport syndrome. "It could have been a genetic mutation that came out of nowhere," she said. 

In November 2023, Ellie began dialysis, and a few months later, she had to leave her job in surety bonds due to a lack of energy and brain fog. She started with peritoneal dialysis, which she liked, but unfortunately, this method aggravated Ellie's endometriosis, which is a disease where tissue similar to the lining of the uterus grows outside the uterus and can cause inflammation and scar tissue in the pelvic region. "Between the pain and the burning, I couldn't finish my treatments," Ellie said. As a result, she switched to hemodialysis — first in-center and then home hemodialysis. 

Ellie views dialysis with the same kind of mentality she had whenever she competed in bodybuilding competitions. "[Dialysis] is giving me life. It's giving me another day. I have to do it. Do I love it? No," she said. "But you have to do the hard work to get to the prize. That prize is going to be a kidney one day, so I keep that in mind."

Waiting for a transplant has been difficult for Ellie. She is on a waiting list in Miami, where she lives, and is currently looking into being added to waitlists at hospitals outside of Miami, as well as hospitals outside of Florida. However, her preference is to find a living kidney donor, since statistically those transplants tend to last longer than deceased kidney donor transplants. While she waits, she has to carefully monitor what she eats and her energy level and try not to overexert herself, which has included cutting back on socializing with others. "My social life has greatly diminished," she said. 

Ellie said there is so much she wants to do with her life when she gets a transplant, including going back into bodybuilding and becoming a mother. She also intends to continue her advocacy work in the kidney community as an Ambassador and a Kidney Health Coach® for the American Kidney Fund, which she became acquainted with while doing in-center hemodialysis. "Being part of the American Kidney Fund has been absolutely incredible," Ellie said. "I've learned about so many resources to help others, especially when it comes to the donor community. Having AKF behind me has made me feel like I can accomplish anything, and I can show others that they can do the same." 

Perhaps Ellie's biggest goals in her advocacy work are to let other people living with kidney disease know that they are not alone in their journey and that they have the power to advocate for themselves. "There are other people online," she said. "You can reach out to people like me. It helps to talk, and it helps to ask all the questions. If your doctor is saying 'no, sorry, this is how it is and how it's going to go' and you don't feel right [about that], find another doctor if it's in your reach. Don't take no for an answer. Stand your ground and learn your information. You can't advocate for yourself if you don't know what you're talking about."  

We are happy to report that Ellie received a kidney transplant on Nov. 9, 2025.

Visit our website for more information about Alport syndrome. 

Click here for more information about advocacy and becoming an AKF Ambassador.

For more information about becoming a Kidney Health Coach, click here. 

Click here for more information on Ellie's kidney journey.