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Well Being Shape Up > Blog > Healthcare > Everything Suni Lee Has Shared About Her Rare Kidney Disease
Healthcare

Everything Suni Lee Has Shared About Her Rare Kidney Disease

Kayne Collins
Last updated: July 30, 2024 8:37 pm
Kayne Collins
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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, which sidelined her training and rocked her physical and mental health for months. Since then, Lee has shared snippets of her health journey, and on June 30, she qualified for the Paris Games—where she’s already crushing her routines (in a dazzling leotard and sleek press-on nails, naturally). On July 28, Lee qualified for the all-around final set for August 1—where she’ll face off against Simone Biles in a history-making event. And on July 30, Team USA dominated, taking home the gold in the women’s team final.

At her lowest point, though, Lee feared that competing in gymnastics ever again—let alone earning a medal at another Olympics—would be impossible, she told SELF for an October cover story last year. “We didn’t know what was possible. We didn’t know what was wrong with me,” she said. 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 problems (which runs in her family, something that Lee hadn’t known earlier on, The New York Times reports). 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.

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