In 1996, a 70-pound, 3 foot tall baby named Zach Strenkert appeared on the "Jerry Springer" show.
Strenkert’s parents, Laurie and Chris, were desperate for answers to why their 17-month-old son was growing an inch and gaining 2 and a half pounds every two weeks.
“He’s not a big eater. That’s one of the most frequently asked questions,” Laurie Strenkert told Springer. “And that is also why we’re so concerned. Where is the growing coming from?”
Springer connected the Strenkerts with a geneticist, who diagnosed their son with Simpson-Golabi-Behmel syndrome (SGBS). The family finally had an answer, but there is no treatment to reverse the rare overgrowth disorder that occurs primarily in males.
“Everyone thought that my mom was overfeeding me. Child protective services even got involved, but my family wasn't doing anything wrong," Zach Strenkert, now 28, tells TODAY.com.
By age 3, he weighed 110 pounds.
“I remember when I was in fifth grade, I was 250 pounds. I was always hungry because of the rate at which I was growing," Strenkert says.
He dreaded gym class because he was in constant pain. Strenkert also suffers from fibromyalgia, scoliosis and arthritis, he says, adding, "It was very difficult for me to be active. My body always hurt.”
By age 23, Strenkert was at a more normal weight and height, as the excessive growth caused by his SGBS slowed. But because he wasn't exercising and was eating a lot of processed food, he started gaining weight again.
Simpson-Golabi-Behmel syndrome
SGBS is a genetic condition and a type of overgrowth disorder that affects many parts of the body, according to the National Library of Medicine. It's most common in males, but it's not clear how often the disease occurs overall. At least 250 cases have been confirmed.
Obesity in adulthood isn’t necessarily a symptom of SGBS, explains Dr. John Pappas, director of clinical genetic services at NYU Langone’s Hassenfeld Children’s Hospital, who does not treat Stenkert.
“It’s not an overeating syndrome,” Pappas tells TODAY.com, adding that he believes Strenkert's weight is likely connected to genetics. “I would say he was predisposed to obesity,” he adds.
Individuals with SGBS also tend to have health problems related to the syndrome throughout their life. “SGBS involves many organs and characteristically is associated with overgrowth and neurodevelopmental abnormalities,” Pappas says.
Strenkert says he also has anxiety, Tourette’s, depression, chronic fatigue syndrome, sleep apnea and obsessive compulsive disorder. He's also at risk for several types of cancer and goes for regular screenings. Pappas says the conditions Strenkert struggles with are not uncommon for people with SGBS.
A turning point
As COVID-19 took hold and the world entered lockdown in 2020, Strenkert, a competitive gamer in Port Jervis, New York, remembers feeling depressed and isolated.
“I was getting flown places and making a name for myself,” Strenkert says. “Then the pandemic hit, and I was closed off from everything and everyone."
Strenkert had to be especially careful because of his preexisting health issues. He was also carrying 500 pounds on his 6-foot, 4-inch frame, and obesity is associated with increased risk of severe illness and death from COVID-19.
“One day I woke up and I thought, ‘What can I do? Can I try something?’” Strenkert recalls.
He decided he would take a walk around his backyard.
“I set an alarm for 10 minutes. I was like, 'Even if it doesn't work, let's see what happens," Strenkert says. “I could barely do 10 minutes — but I did it."
Each day, Strenkert would push himself to go a little bit further. He found that meditating helped him release his inhibitions around exercise. He also made a playlist with his favorite songs to keep him motivated.
“Sometimes I’d go longer than I expected because I wanted to listen to more music,” he says.
Eventually, Strenkert got into power walking around his neighborhood. He now aims for 30 to 45 minutes seven days a week and doesn’t shy away from hills.
“Now I can do about eight miles in an hour,” Strenkert says. “I really try to push myself, so sometimes I'll wear a weighted backpack. But I know my limits. My bones aren't great, and I don't want to injure myself."
Strenkert says he’ll also jog in place when he’s gaming, and that he once clocked 20 miles in one day without even leaving his house. To strengthen his core, Zack does wall pushups. Regular pushups are too painful because of his fibromyalgia.
“If I’m watching TV, I’ll do wall pushups when commercials come on,” he says. “I really enjoy fitness now. It’s crazy to me because there was a time where I didn’t want anything to do with exercise."
Strenkert, who used to guzzle high calorie energy drinks, has also changed diet. His go-to meals include dry cereal with nuts, chicken breast and whey protein shakes. But no food is off limits.
"I still love takeout, but I eat it in moderation. You have to enjoy yourself," Strenkert explains.
At his lowest weight, Strenkert was 234 pounds. He's currently hovering around 280 pounds and feels better than ever.
"When I was 234, people were actually starting to worry about me, they were like, 'Zach, you're looking very gaunt.' I was religiously tracking everything I ate," he says.
Strenkert has since stopped doing that. Instead, he practices mindful eating. His motto: "Make more good decisions than bad, and stay active."
Strenkert says he's sharing his story in hopes of inspiring others who are struggling to start — or restart — their health and fitness journey.
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