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'I'm a fighter': KC man uses adversity to overcome rare genetic condition

Antwan Winkfield
Posted at 5:28 PM, Jun 18, 2024

OLATHE, Kan. — The Kansas City area is no stranger to a physician shortage.

The Rural Health Information Hub reports 111 of Missouri's 114 counties face a primary care physician shortage. Nearly two-thirds of Kansas counties face the shortage, too.

Shortages lead to complications for patients who rely on specialists, like Antwan Winkfield.

Winkfield has neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN), a rare genetic condition where tumors grow on his nerves.

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Antwan Winkfield

“I've had a total of 18 surgeries. I've been in the hospital over 25 times,” Winkfield said. “I have severe scoliosis, and then as I've gotten older, because of the NF, it's caused a chronic lung disease, which is why I'm on a ventilator now.”

Winkfield doesn’t have a specialist in Kansas City, which has led to him spending his own money — and time — visiting the next closest specialist in St. Louis.

“It makes you not want to go,” Winkfield said. “You’ve got to pay for hotels and gas and food while you're down there, and then you get this huge bill.”

He said he’s had to delay going to see his specialist for now as he tries to figure out an issue with insurance coverage. Winkfield's bills with his specialist cost thousands of dollars as is.

“Patients sometimes have to travel long distances because there's no available physicians, especially specialty physicians, to be able to meet their needs,” said medical student Austin Dada.

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Austin Dada

Dada, who studies at the University of Missouri-Columbia, said he's seen caps on residencies and physician burnout cause part of the shortage. However, he's committed to making a difference.

“As time goes on, it's going to get worse unless we do something to kind of increase the workforce,” he said.

In the meantime, as patients await a solution, Winkfield said adversity is nothing more than another day.

“Your adversity doesn't determine your destiny,” he said.