Teen keeps swimming despite disorder inflamed by exercise

Published: Aug. 23, 2018 at 3:16 PM EDT
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It's the ultimate catch-22; a rising star swimmer diagnosed with a disorder that tends to get worse with exercise. In this case, despite how bad it makes her feel, swimming is Cassidy Allitt's prescription to get better.

Any swimmer will admit, there's something in the water. Something soothing.

"It's very comforting," said swimmer Cassidy Allitt, 14. "It's just kind of like you're in space when you're under water, you're just kind of floating around."

For Allitt, the water at

is where she found her confidence.

"I felt my strongest, I was dropping a lot of time I was feeling really good. I was really confident in my strokes and I was working harder and harder to get better," she said.

Just as things were going well, she hit a wall.

"We did these sets where we would take our heart rates and we would try to hit like 180, 160 beats per minute and I was hitting the wall, not working necessarily harder than my peers, and I was like 20 to 40 beats higher than everyone else," she said. "I'd feel fine so I thought just because the numbers are high nothing is wrong, but I was wrong."

Cassidy and her mom, Shannon Allitt, didn't get a clear answer from the doctor. Cassidy started getting headaches and noticed her hands and feet turn purple when she stands too long.

"Nothing really felt like it was working. My medicine wasn't working, swimming wasn't going well, I wasn't dropping time," she said.

Until finally, doctors had an answer. It was dysautonomia, which is an umbrella term for conditions that cause a malfunction in the autonomic nervous system. In Cassidy's case, it's postural orthostatic tachycardia syndrome (POTS). She has an extremely high heart rate working against extremely low blood pressure.

"It kind of feels like there's weights on your legs and every step you take is like ten times harder than normal," Cassidy said.

Swimming seemed to make it worse.

"I would just lay in bed all day, just stay in bed because I couldn't, it drains me so bad," she said.

Days like that come after a hard practice or a weekend-long meet, when Cassidy is so exhausted, she doesn't leave her room. They call these days the dark days.

"She's dressed in a hoodie and a blanket and takes her stuff and her Gatorade and goes downstairs and is dark and quiet and she needs that. Then she's good for a few days and then we have a dark day," said Shannon.

Since her diagnosis, her diet has changed. She drinks more than a gallon of water and eats 3,000 milligrams of sodium per day.

She also takes 60 pills a week to keep her heart rate and blood pressure in check.

"It's really hard to be a parent and look at your kid and at some point you have to say my kid is sick," said Shannon. "I know her heart is fine, and that was the biggest concern. I was like we're quitting swim, we can't do this."

They thought about walking away from the sport. One of the common side effects is exercise intolerance. Doctors had a theory that the same sport that was wearing her out, was also keeping her healthy.

"Because I'm working out so much my heart is really healthy, even though I have all of these symptoms, it's not the heart that's causing it. And if I keep my heart healthy, the symptoms will stay minimal," said Cassidy.

In fact, if she quit, doctors told her that her heart could suffer trauma from the sudden stop in exercise. Swimming also offered a unique benefit.

"In swimming, I'm fine because I'm flat so my blood is flat and my blood pressure is fine, but when I stand up it all goes to the bottom of my feet, and it's not getting to my head which causes me to get lightheaded," said Cassidy.

"She's a rock star. I mean, really. She goes to all of her practice, as long as she can," added Shannon.

In a sport that focuses on working hard to get faster by the hundredth of a second, she has to hold back.

"It's definitely a love-hate relationship. Some practices I'm like why am I doing this? It hurts, I'm dizzy, I need to drink more water and need to get my sodium up," admitted Cassidy.

But she knows the same water that's pulling her back is pushing her forward.

"I don't want to leave it. If I were to quit, which I'm not planning on it, it could really damage my health too. So I might as well just stick with it," she said.

As any swimmer will admit, there's something in the water, something healing.

"I'm learning how to be more patient," said Cassidy. "I think there's an answer out there, we just have to find it."

The Allitt family is hosting a

to raise money to find a cure for dysautonomia at Painting With A Twist in Farragut on Sunday, August 26 from 2-4 p.m. Everyone is welcome to attend.