Are you among the 10 million people who are fanatic about March Madness? With interest in college basketball at a fever pitch, let’s catch up with an NCAA Division II player who faces a unique challenge.
Imagine playing the game you love, pushing your body to its limits, knowing that cooling down naturally isn’t an option. That’s the reality for college forward Jacobi, who defies the odds every time he steps on the basketball court.
Born with x-linked hypohidrotic ectodermal dysplasia (XLHED), Jacobi lacks sweat glands, making it nearly impossible for his body to regulate his temperature. Yet, he hasn’t let that stop him.
He’s spent the last few years mastering his limits, conditioning his mind and body to compete at its highest level.
A Growth Spurt and a Dream
When we last checked in with Jacobi in 2022, he was getting ready to graduate from high school. He had his sights on playing college basketball, with dreams of going pro.
How are things going? After growing nine inches in high school to 6’ 6”, he grew another inch in college! The extra height helps when your favorite thing to do is dunk a basketball. He has the bruised wrists to prove it! The 6’ 7” forward is now a junior at the University of Central Oklahoma studying physical education.
Learning to Regulate His Body
Like most kids growing up with XLHED, Jacobi had to learn how to regulate his temperature while playing sports. He wore various cooling gear on the court. One of his parents was always on the sideline with water. His teammates would spray him with a water bottle.
But, it was often trial and error to find out what worked and it was frustrating for the determined athlete.
“Growing up, it was hard trying to play sports overall because of the no sweating,” Jacobi said.
I always complained to my parents how I didn’t want to wear it (cooling gear). I wanted to be, ‘normal’ like the rest of the kids and just go out there and do whatever I wanted.”
Some coaches would bench him frequently because they were afraid he would overheat. A new coach his junior year in high school asked Jacobi to tell him when he needed a cooling break rather than the other way around. Jacobi started listening to his body to determine what worked best for him.
“As I got older, I was able to control it way better than when I was younger,” Jacobi said. “I played basketball without the cooling gear and learned how to regulate my body temperature. I use breathing techniques, like breathing slowly, like in through your nose out through your mouth. Just slow, deep breaths. It helps me with pacing and focus.”
Pushing His Limits
At 21, Jacobi is bigger, stronger and has three seasons of college basketball under his belt. But other parts of his journey have evolved, too. He’s figured out how far he can test his body.
“It’s not just about [playing] the games. It’s about understanding the game from a deeper perspective. I’ve learned how to adapt to my body over time, and push through moments of exhaustion. I’ll try to push my limits a little bit to see how far I can really go in the game.”
He’s mentally much tougher and confident, too.
“It’s all about the mental state,” Jacobi said. “You have to think, ‘I can do it.’ You have to make sure you know that you can do it. I had some standout moments – where I had a key shot during a high pressure game, where I managed to outlast a tough opponent, where I played almost a whole 40-minute game…because it’s not just about athletic ability. It’s me, my person – I can push myself through it.”
His perseverance has not gone unrecognized. Jacobi received the USA Today Courage Award for excelling as an athlete despite his inability to sweat.
This season, Jacobi made the second team all conference and was the leading rebounder for the Mid-America Intercollegiate Athletics Association (MIAA) conference.
Training Smart with XLHED
Jacobi’s body awareness and having XLHED have influenced every part of how he approaches his game now.
“It’s definitely shaped how I train. There’s more emphasis on the conditioning part that also works with my body and learning to maximize my strengths rather than worrying about what I can’t do.”
To test his limits, he carefully monitored how his body was reacting to the heat in practices. He would slowly and carefully try to go longer and longer to see how his body would react.
When it’s time to chill, he makes sure the team trainer has cooling towels so when he does come out, he can cool down his body. And of course, water and hydration are key.
“The main thing is staying hydrated, too. My mom was always all about drinking a lot of water every day. And it also helps a lot to just drink cold water if you’re hot.”
Inspiring the Next Generation
Jacobi liked attending NFED Family Conferences growing up where there were other kids like him.
“I hope that we can build more spaces to see athletes with rare diseases connect, share tips and advocate for ourselves. It’s just not about the physical struggle, but also about the emotional and the mental toll of navigating life in sports with this condition.”
Jacobi wants younger athletes facing challenges, especially those who are affected by HED, to know that the challenges don’t define who they are. He suggests they use them to fuel them like he did growing up.
Find what makes you feel empowered by your own body, and don’t be afraid to speak up for your needs, whether it’s taking extra breaks, adjusting to your training or having to fit someone else’s idea of an athlete to succeed.
– Jacobi
Flying High on the Court
And succeed he has! As the leading rebounder for the Bronchos, Jacobi says his best ability is his jumping. His proud mom, Franki, agrees.
“He’s known for just high flying in the gym. People always say he’s very entertaining to watch. His dunks, just the way he jumps, is ridiculous! He came out of nowhere last night….A kid missed a 3-pointer, and then Jacobi comes flying through the middle, grabs it in the air and puts it back in. Everybody was like, ‘Where did he come from, like holy cow!”
Jacobi has proven that with resilience, smart training, and an unshakable belief in himself, nothing can keep him from soaring—on or off the court.
What’s your experience with ectodermal dysplasia and playing sports? We’d love to hear about it and share with our NFED community.
Share Your StoryThis year’s Family Conference which includes Kays’ Kids Camp and Teens Program is July 10-12 in Minneapolis.