Katie Ledecky, the most dominant female swimmer of her generation, has been making waves at the Paris Olympics.
But behind her Olympic gold medals and world records lies a lesser-known story of perseverance and resilience. In her recently released memoir, “Just Add Water: My Swimming Life,” Ledecky reveals her battle with postural orthostatic tachycardia syndrome (POTS), a condition that affects the nervous system.
What is POTS?
Postural orthostatic tachycardia syndrome (POTS) is a disorder of the autonomic nervous system, which controls body functions we often don’t think about, such as heart rate and blood pressure.
As Ledecky describes in her memoir, “I pool blood in the vessels below my heart when I stand. My body then releases extra norepinephrine or epinephrine, which adds additional stressors on my heart, making it beat faster. Which, in turn, brings on dizziness, fainting, and exhaustion.”
The condition is generally diagnosed when a patient’s heart rate increases by at least 30 beats per minute (or 40 bpm in adolescents) within 10 minutes of standing, without a significant drop in blood pressure. This syndrome predominantly affects young women, such as Ledecky, particularly those between the ages of 15 and 50.
When was Katie Ledecky diagnosed with POTS?
Ledecky first experienced symptoms of POTS during the 2015 World Aquatics Championships in Kazan, Russia, she wrote in her memoir.
One evening after dinner, she felt unusually hot and lightheaded. In the days and weeks that followed, she endured episodes of extreme fatigue and dizziness, sometimes feeling faint even during simple activities like walking. These troubling symptoms eventually led to a surprising diagnosis: POTS.
In her book, Ledecky explains how her body struggles to regulate blood flow when she stands, forcing her heart to work harder and causing dizziness, fainting, and exhaustion.
How is POTS treated?
The causes of POTS are multifaceted including a possible link to COVID-19 infections, but in general are not entirely understood.
The best way to manage POTS also varies, but it often includes lifestyle modifications, such as increased salt and fluid intake. This is part of Ledecky's approach; her mother often has to remind her to get more salt or stay hydrated.Ledecky also avoids alcohol and wears compression garments, which can help manage symptoms.
Fortuitously for Ledecky, swimming is among the recommended exercises for patients with POTS. There is no specific cure for POTS, but many have found improvement of symptoms with some of the recommended treatments.
How POTS affects Ledecky’s swimming
Ledecky has not specifically described any changes to her swim training or routines as a result of the diagnosis, but she has stated in a previous interview with Self that the diagnosis was a new thing she had to acknowledge and be aware of, something that was always in the back of her mind.
"I’ve had it under control completely. I really just had to add salt to my diet and wear compression gear. Whenever I get sick and when I go to hot environments, I need to be especially careful to stay on top of my salt and hydration," she said.
"I thought it was important to tell my whole story, and that was a part of my story, especially leading up to the 2016 Olympics. It was a new thing that I had to acknowledge and be aware of, something that was always in the back of my mind. I wanted to share how that’s impacted me at different points and how I’ve been able to push through that and take control of that part and live a healthy lifestyle."
A recent study found that features of POTS, such as the change in heart rate or blood pressure when going from laying down to sitting up, can affect the performance of elite swimmers.
Why Ledecky’s diagnosis matters
Ledecky credits her former coach Bruce Gemmell, who recommended she see a specialist at Johns Hopkins, where she promptly received a diagnosis and treatment plan. But for most people with POTS, being diagnosed can take anywhere from two to seven years, including numerous emergency room visits and misdiagnoses along the way.
Ledecky’s public disclosure of the diagnosis has led to a groundswell of additional testimonials on social media and more awareness of a tricky to identify but possibly debilitating condition.
It is important to note that Ledecky’s experience with POTS is just that — unique and individual. Many people with POTS experience a great spectrum of symptoms, with some barely noticing any effects to others who experience complete disability.
One thing is certain: Ledecky’s talent for breaking Olympic records while raising awareness about a significant chronic condition deserves its own gold medal.
Kavita Patel, MD
Dr. Kavita Patel is NBC News medical contributor and professor of medicine at Standford.