Everything Suni Lee Has Shared About Her Rare Kidney Disease
Karen Hickey/ISI Photos/Getty Images/Amanda K Bailey
After Suni Lee won gold in the women’s gymnastics individual all-around final at the Tokyo Olympics, the Paris Games felt like a natural next step—a shoo-in, even—until a sudden bout of painful and distressing symptoms turned her world upside down (and not in the adrenaline-fueled, mat-flip kind of way).
Last year, the now 21-year-old gymnast was diagnosed with two rare kidney diseases. Since then, Lee has shared snippets of her health journey, and on June 30 she qualified for Paris—something that, at her lowest point, she feared was impossible. Below, we dive into everything Lee has shared about her kidney disease, from the jarring warning signs to how she’s feeling today.
Lee’s first symptoms appeared seemingly overnight.
In February 2023, Lee woke up with swollen ankles and quickly blamed her intense training routine, she previously told SELF in a cover story. She didn’t think much of it until the following morning, when her face, hands, and legs—essentially her whole body—followed suit. “I just kept getting more swollen…and I think I gained, like, 40 pounds,” she recalled. The swelling immediately affected her training. “I kept peeling off the bar. I couldn’t hold on,” she said. “My fingers were so swollen.”
At first, doctors thought Lee was experiencing an allergic reaction, but as her symptoms progressed over two weeks, Lee knew that was unlikely. In March 2023, she had to sit out of an NCAA meet—at this point she was competing as a student with Auburn University’s gymnastics team—and all the while she and her medical providers were at a loss for what was wrong. “It affected my whole body and how I looked and how I was feeling,” she said.
In addition to extreme swelling (she had sometimes even woken up with her eyes swollen shut), Lee also experienced hot flashes, cold spells, headaches, and cramping. At the April Team USA Media Summit, she shared that she lived with constant pain, nausea, and lightheadedness. “I could not bend my legs the slightest. I couldn’t squeeze my fingers,” she said.
This all took a mental toll too. That time of her life was “very, very miserable,” Lee candidly shared at the summit. “I couldn’t even look at myself in the mirror,” she told Sports Illustrated in June. “I was just rotting in my bed. I couldn’t talk to anybody. I didn’t leave the house.”
She was ultimately diagnosed with two rare kidney conditions.
Lee had undergone multiple medical tests to no avail when USA Gymnastics team physician Marcia Faustin asked if her doctors had completed a routine urine test. Lee hadn’t, and admitted that she had been having difficulty peeing for two weeks—a red flag that pointed to kidney trouble. Her doctors ran more labs, and she was finally referred to a specialist who recommended a biopsy of her kidney tissue, which would determine if it had signs of damage or disease.
When SELF spoke with Lee last year, she shared her diagnoses off the record, understandably hesitant to state specifics because her doctors believed her conditions might evolve. Since then, she has publicly shared that she was diagnosed with two separate conditions related to her kidneys but has not disclosed their names. Lee did tell SELF that her conditions are rare and that there is no cure yet, though she is on a regular medication regimen to manage her symptoms.
Lee retired from college gymnastics to focus on her health.
On April 3, 2023, Lee announced that she wouldn’t finish her sophomore gymnastics season at Auburn. “I have been dealing with a non-gymnastics health-related issue involving my kidneys,” she shared on social media. “For my safety, the medical team did not clear me to train and compete over the last few weeks. I am blessed and thankful to be working with the best specialized medical team to treat and manage my diagnosis. My focus at this time is my health and recovery.”
Even then, she remained determined to bounce back. “I will not stop pursuing my dreams for a bid to Paris in 2024,” she concluded. “In fact, this experience has sharpened my vision for the future.”
At times, she started to lose hope.
This sudden left turn was not easy for Lee to process. “How do I just randomly wake up one day swollen, and now I’m stuck with this condition for the rest of my life?” she told SELF.
“That was probably the hardest couple of months,” she recently told Elle. “I didn’t know if I was going to be able to do it.” There were times when her “motivation started to fall,” she said at the Team USA Media Summit.
She pressed forward with modified training and returned to the mat with a new perspective.
suni lee poses for bronze medal
After her diagnosis, Lee’s team adjusted her training schedule. In August 2023, only about seven months after her symptoms first flared up, Lee competed at the Core Hydration Classic in Chicago, earning a 14.5 score on the balance beam, only second to Simone Biles (14.8). At the 2023 US Gymnastics Championships, she earned bronze on the beam. “This comeback was so much more than my return to elite gymnastics,” Lee wrote on Instagram after the US Classic. “It was me proving to myself that I can overcome hard things, and to hopefully inspire others to never let life’s setbacks stop you from going after your dreams.”
In January, doctors green-lit her for the Paris Games.
On January 4, Lee received great news: She could likely compete in the 2024 Summer Olympics. When Sports Illustrated asked her to elaborate on the moment, she declined, but her coach Jess Graba filled in the gaps. “That’s when [Lee] started saying, ‘I think they’re getting a handle on it,’” Graba said. “ ‘I’m feeling a lot better. The doctor just called me yesterday and told me that they think they can knock down some of the medications. So I’m feeling like maybe I want to try.’”
Now, Lee is in remission.
“I’m getting a lot stronger,” she told Elle. “I’ve been able to train a lot more, and I am just so happy, because I really didn’t think I would be here. To be here is quite incredible.” She shared a similar statement at the Team USA Media Summit in April. “Healthwise, I’m doing really good right now…. We know what to do and the right medication to take.”
With that came improvement on the mat. “Taking my time in the gym has been feeling amazing,” she added. “All of my skills are coming back and I’m just working on consistency.” She’s built back up to eight-hour training sessions—and her hard work is paying off. At this year’s US Championships, she scored silver in beam; at the US Olympic Trials in Minneapolis, she left with a gold medal in uneven bars, as well as a silver in the all-around.
On top of her medication regimen, social media breaks and daily therapy sessions have helped Lee stay centered. “My mental health is the number one priority,” she told Elle. “I’m just thinking of it as, it’s for me. I’m competing for myself. I’m proving it to myself.” Her confidence has slowly returned too: “I feel like I’m getting back to regular Suni.”
And she’s raising awareness with the American Kidney Fund.
In her return to the Olympic floor, Lee is using the international stage to shed light on what it’s like to live with kidney disease. “I’ve worked so hard to persevere in the face of a life-changing diagnosis to be able to represent my country in Paris this month,” she wrote on Instagram on July 11. She hopes her story encourages others to learn about and advocate for their health, and she plans to share more about her experience soon.
For now, though, Lee and her fellow Team USA gymnasts are thrilled to embark on their “redemption tour,” they told Today on July 1. “There were so many times when I thought about quitting and just giving up because I was so sick,” Lee said. “But once I had those people around me who lifted me up and supported me and just made sure that I was good, I knew that this is something I wanted.”
suni lee tears up olympic trials
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Originally Appeared on SELF
