Walking past a group of young men on the Corner one night, Tori McKenzie could not escape their taunts.
It was not, unfortunately, a new experience for the University of Virginia student. Other people, after noticing McKenzie’s muscular physique, had wondered aloud if she were on steroids – or if she were a man. And so this latest incident, McKenzie said, “kind of brought me down.”
She did not stay down. McKenzie texted fellow UVA sprinter Jordan Lavender. She was having a tough time, McKenzie told Lavender, who invited her friend to join her at another spot on the Corner.
“We ended up having a great night together,” Lavender recalled.
Many more happy days have followed for McKenzie, a fourth-year student who was born with congenital generalized lipodystrophy, a rare medical condition characterized by an extremely muscular appearance and an almost total lack of body fat.
“It’s been tough for her, but I’ve seen her become comfortable in her own skin and just accept who she is, what she has to deal with, what most people don’t have to deal with at all,” said Lavender, who’s living with McKenzie this academic year.
“Instead of trying to fight it and trying to hide from it, she just embraced it and said, ‘You know what? I’m going to be me. I’m going to wear what I want to wear, I’m going to act how I want to act, and if you don’t like it, so be it, but I love it.’”
McKenzie, who’s from Chatham, a small town near Danville, said her life changed for the better late in the fall of her third year. Conversations she had with Dr. Jason Freeman, UVA’s sports psychologist, helped.
“My second year, that was really rough for me,” said McKenzie, a Women, Gender & Sexuality major. “I kind of let a whole bunch of stuff get to me, and things weren’t going well. My grades were slipping, and I was kind of depressed.
“But I think after I took some of my [major] courses and learned about different things, and then talked to more people – Dr. Freeman, for example – I started to build myself up. And then I had people outside, on social media, who were actually supportive of me. So that helped a whole lot. And by then I had started to say, ‘You know, Tori, you look good. You have to embrace it.’ That’s what started it.”
A graduate of Chatham High School, where she won six state titles, McKenzie was one of Bryan Fetzer’s first recruits at UVA. “We were looking for diamonds in the rough to recruit,” said Fetzer, the Cavaliers’ director of track & field and cross country, “because I knew we weren’t going to be able to get the marquee sprinters right away.
“When I was [coaching] at Mississippi State, I had some kids that came from really small places and blossomed and did great. So I figured this might be a good situation for Tori. She was the best kid in her classification, but that doesn’t necessarily mean, ‘Hey, I’m going to be an NCAA superstar.’ “
McKenzie experienced some culture shock in Charlottesville. “She is country,” Lavender said, laughing, and McKenzie acknowledges as much.
Her family’s home is “legitimately in the country,” she said. “Behind our house is a whole bunch of cows and all of that.”
And so life at UVA “was a big change,” McKenzie said. “I wasn’t used to it at all. I kind of stuck to myself when I first got here.”
Lavender was two years ahead of McKenzie at UVA.
“When Tori came in, she was really quiet, and she didn’t talk to anybody [on the team],” recalled Lavender, who graduated in 2015 and now trains in Charlottesville while competing professionally.
“She was always on her phone. You could see she kind of wanted to be involved in the conversations [with teammates], but she wasn’t quite comfortable.
“Being an upperclassman that year, I knew it was my responsibility to kind of take people under my wing who I thought could have been struggling or just didn’t really feel a part of the team. So I just asked her one day, ‘Hey, do you want to go to the Pav to get some lunch and just talk?’ You could see her eyes kind of light up, like, ‘Yeah, I would love to go.’”
Another UVA sprinter, Peyton Chaney, was a class behind Lavender. Chaney, now a first-year law student at Howard University, is one of Lavender’s best friends, and they worked together to help McKenzie.
“Peyton and I had a conversation, and I said, ‘You’re the next one right under me. You’re going to need to do the same thing with her if it’s continuing on.’ So it was kind of a tag-team effort. All three of us are really close now,” Lavender said.
McKenzie has three siblings – all sisters – the youngest of whom also has congenital generalized lipodystrophy. McKenzie was diagnosed with the condition when she was about six months old.
“It’s a very rare condition, so we were often going back and forth to doctors, trying to figure out how to regulate my blood sugars and stuff like that,” McKenzie said.
“So that was difficult, up until I was in ninth grade, when we found a specialist in Bethesda, Maryland, at the National Institutes of Health. Somebody up there got in contact with a doctor we were seeing in North Carolina, and that’s when things got rolling and I started down the right track.”
Depending on traffic in the D.C. area, Bethesda is about a 4½-hour drive from Chatham. McKenzie was 14 when she joined a study at NIH, and for years she went there twice annually. She still makes the trip once a year.
At NIH, the staff treated McKenzie and others with her condition with various medications. Some caused her to lose weight, and the use of those was discontinued. Most effective, McKenzie said, was a hormone called Leptin that she still takes daily.
“I think I’ll pretty much be on it the rest of my life,” she said. “I just take a shot every morning. It’s like an insulin shot, a little needle you stick into the side of your stomach.”
She carefully follows the diet laid out for her at NIH.
“There’s a lot of stuff that we have to watch when we eat,” McKenzie said. “We can’t have a lot of bread, pasta – that’s difficult for me, because I love pasta. But as long as I know that I’m doing right, that I’m eating vegetables and fruits and stuff like that, I should be good. I just can’t go overboard.”
On the track, McKenzie placed 11th in the 60-meter dash at the Atlantic Coast Conference indoor championships and 11th in the 100 at the ACC outdoor meet as a junior. Outdoors, she also runs the 200 and on the Cavaliers’ 4x100 relay team.
Her fastest time in the 60 – 7.54 seconds – ranks seventh all-time at UVA.
“My goal for the season was to get down to 7.4,” McKenzie said. “I’m working hard. Hopefully I get to it.”
McKenzie, who also starred in basketball at Chatham High, has developed into one of the ACC’s top sprinters, Fetzer said. Perhaps more impressive, he said, has been her growth off the track.
“To see how far she’s come, just socially and embracing herself, is great,” said Fetzer, who coaches Virginia’s sprinters. “She’s a sweetheart of a kid.”
In addition to pursuing her bachelor’s degree at UVA, McKenzie is working to become certified as a personal trainer. She’s also interested in bodybuilding.
“So once college ends, hopefully I’ll be in a gym somewhere,” McKenzie said. “But I’m applying to grad schools for strength and conditioning, because I want to work with a college team for that. So if that were to happen, I’d be really happy.”
McKenzie smiles often as she shares her story. She’s heard more cruel comments than a person should have to endure, and her college years “started out a little shaky,” McKenzie acknowledged. But with the support of family, friends, teammates and coaches, she’s thriving.
“Everything is starting to finally click for her now,” Lavender said.