Willebrand Disease: Mykael's Story

Every day when his alarm rings at 5:30 a.m., 17-year-old Mykael White is up and out the door. First stop—the pool, where he does early morning laps before heading to his second stop—classes at Bonner Springs High School.

His third stop is cross country practice, where he does a 6-mile workout. When he heads home around 6 p.m., Mykael still has homework to do—lots of papers for his comp 1, creative writing and honors English classes. Then, he’s off to bed for some shut eye before the alarm rings, and he does it all over again.

A highly competitive student-athlete who’s qualified for state in cross country and track, Mykael’s goal is to make it to state his senior year in all three sports—cross country, swimming and track—and to set personal records in every event he can.

Health challenges

Only one thing may stand in Mykael’s way of setting those records—his health. Diagnosed at age 2 with a bleeding disorder called von Willebrand disease, Mykael has experienced nosebleeds that last for hours.

“My longest nosebleed lasted for two and one-half hours,” Mykael said. “At the end of last year, I was missing two to three days of school a week because I was having hour-long nosebleeds every day.”

In addition to long-lasting nosebleeds, people with von Willebrand often experience easy bruising, and excessive bleeding or oozing following an injury, surgery or dental work.

Mykael has been a patient at Children’s Mercy since he was first diagnosed, seeing Brian Wicklund, MDCM, MPH, a pediatric hematologist/oncologist.

To prevent prolonged nosebleeds, or abnormal bleeding in his joints or soft tissue, he injects himself with a concentrated blood-clotting factor twice a week. And, if he’s had a long-lasting nosebleed, he has to balance his workout to accommodate his medical condition.

“If I’ve bled a lot that day, I can’t work out,” Mykael explained. “My sophomore year, I was bleeding every day and kept training. It caused me to lose the fluid in my joints and they started hurting. That was not a good year.”
In addition to the von Willebrand disease, Mykael also was born with a Chiari malformation, a condition that caused his brain tissue to extend 7 mm into his spinal canal.

For some patients, the condition doesn’t cause symptoms. But Mykael experiences episodes of headaches and dizziness related to the malformation. He currently sees a physical therapist at Children’s Mercy who is helping him work on balance issues, and a neurologist is helping with the headaches.

No excuses

Though Mykael has health challenges other student-athletes don’t, he doesn’t use them as an excuse to quit the sports he loves—just the opposite. They’re his motivation.

This season, Mykael is getting some extra help with his training, working once a week with Kayla Greiner, PT, DPT, OCS, physical therapist at Children’s Mercy Sports Medicine Village West. This facility is designed to meet the needs of all athletes who want to train and rehab in an environment specific to their sport.

Village West offers a 13,000-square-foot gymnasium and state-of-the-art equipment, including an anti-gravity treadmill, the first of its kind in the area. And because the gym is also used by Sporting Kansas City and U.S. Soccer, it’s not uncommon for student-athletes to work out alongside the pros.

“I came to Children’s Mercy Sports Medicine because I swim every day, and my shoulders were really hurting,” Mykael said. “When I would make a revolution with my arms, I would hear a popping and my shoulders would dislocate. It’s worse when I do the butterfly.”

Mykael’s knees also hurt, but not as much as his shoulders. Though von Willebrand disease could damage Mykael’s joints, his doctors now think he also may have a genetic condition called Ehlers-Danlos syndrome, an inherited disorder that can cause overly flexible joints, or hypermobility.

“I’m waiting to be tested for that at Children’s Mercy genetics, so I can’t say that’s the cause for sure, but it makes sense,” he said.

Going the distance

In the meantime, Kayla has been focusing Mykael’s weekly therapy sessions on stabilizing his knee and shoulder joints.
“We’re doing exercises that help Mykael gain core, hip and scapular control,” she said. In addition to traditional therapy, he has used one of the two HydroWorx therapy pools at Village West to improve his core strength and shoulder joint proprioception, or joint position sense. He also has used the pool treadmills, which allow for cardiovascular training without knee pain.

“Mykael is motivated, hard-working, goal-oriented and very positive with all he’s going through. He’s making good progress,” Kayla said.

Mykael agrees. He’s been doing the physical therapy exercises Kayla has prescribed at home every night. Though he says his joints still hurt, they’re not as bad as when he started six weeks earlier, and he’s pushing himself to set personal records he’s proud of.

“I ran a 5K recently in 17 minutes, 23 seconds. That’s my personal best,” he said. “My goal is to shave another minute off that time, and to make it to state.

“Kayla has shown me what I need to do to improve,” Mykael said.

And once his senior year wraps up, he has his eye on college.

“I’d like to major in engineering and compete at the college level in cross country, swimming or track,” he added. “I won’t let any of this stop me. I want to get better, to be the best I can be.”