AURORA, Colo. (CBS4) – While it can’t be cured, if treated, people can live with a rare disease that affects about one in a million people called pulmonary arterial hypertension. It can be deadly, and it’s difficult to diagnose.
In the U.S., about 1,000 new cases of pulmonary arterial hypertension are diagnosed each year. The disorder is twice as common in females.
“With an education you can do the impossible,” Fran “Kolo” Etzkorn said.
Welcome to clown class. It’s a zany treat for fourth-graders at Guardian Angels School in Denver. Colorado clowns apply makeup and share their art. “Kolo” comes equipped with oxygen. After a diagnosis five years ago, she doesn’t fool around with her health.
“I couldn’t even walk a mile. It was very difficult to go up and down steps. It was just very difficult to live,” she said.
She was treated for asthma, and then Etzkorn learned she had pulmonary arterial hypertension.
“She had extremely severe disease — life-threatening,” said Dr. Todd Bull, a pulmonologist at the University of Colorado Hospital.
Bull explained Etzkorn suffers from dangerous high blood pressure in her lungs.
“The right side of her heart, right atrium, right ventricle, is significantly larger than the left side of the heart and not squeezing effectively,” Bull said.
The rare condition twice as common in females is exacerbated by high altitude. It’s incurable, but treatable. Etzkorn is on medication 24 hours a day, seven days a week pumped through a permanent catheter that sits above her heart.
“The right side of her heart is shrunk down to a much more normal dimension, it’s squeezing much more vigorously,” Bull said.
“I’m really living a great life with everything that’s been done,” Etzkorn said.
At 75, Etzkorn now clowns around nearly 50 times a year. She says she feels good, and even better when she makes other people smile.
Bull says in the 1990s there were no effective therapies. Now there are 13 Food and Drug Administration-approved medications and new developments almost monthly.
University of Colorado Hospital’s Pulmonary Hypertension Care Center was just accredited as a Center of Comprehensive Care (CCC) — the only hospital in the region to receive that honor due to the extensive ongoing research to improve treatment of the disease.