When former professional baseball player Bernie Williams was a child, his father would take him and his brother, Hiram, to a field close to their school to practice throwing and batting.
His father didn’t know it then, but he’d been paving the way to his son’s future 16-year Major League Baseball career as a New York Yankee.
Now, Williams is aiming to honor his dad’s memory and give others their best chance at life, too, by raising awareness of the incurable condition that took his father’s life in 2001: idiopathic pulmonary fibrosis (IPF).
“It’s still hard for me to believe it’s been that long,” says Williams, who described his father as “Superman” and “a person that believed that nothing was impossible.”
IPF causes permanent scarring of the lungs and difficulty breathing. It is responsible for 40,000 deaths in the United States each year — as many as breast cancer, according to the pharmaceutical company Boehringer Ingelheim.
For Williams’ father, the onset of IPF was gradual but apparent. Each day, Williams says, his father became increasingly short of breath. As his father hesitated to see a doctor, once-easy physical tasks turned laborious, and he became increasingly plagued by coughing fits.
Even when his dad sought medical help, the family’s journey to a diagnosis aligned with that of other families facing IPF — the answer wasn’t immediate.
IPF is often confused with other, better-known diseases such as chronic obstructive pulmonary disease (COPD), congestive heart failure and asthma. On average, a patient sees three doctors over the course of one to two years before he or she is able to receive an appropriate IPF diagnosis. Data suggest 50 percent of IPF cases are initially misdiagnosed.
When the Williams family finally found a doctor with the right experience, the diagnosis was atypical — IPF — but the prognosis was anything but. “He was expected to have just a few more years to live — a sad and painful reality for me and my entire family,” Williams says. Most patients with IPF receive the same fate post-diagnosis.
After many phone calls from the dugout at Yankee stadium, Bernabé Williams, Sr. passed while his son Bernie was on a plane to Puerto Rico coming to visit.
With Boehringer Ingelheim and Minor League Baseball (MiLB), Williams is striving to raise awareness of IPF symptoms, the importance of an early diagnosis, and treatment options through the organizations’ Breathless campaign. In support of the effort, there will be 75 “Breathless Blowout” games held at 15 minor-league baseball parks throughout the United States this season. Fans will get free gum and bubble blowers, as well as receive educational materials on IPF.
Williams says he plans to attend multiple “Breathless Blowout” games to throw out first pitches or perform “Take Me Out to the Ballgame” on guitar. At the Eastern League All-Star Game in Trenton, N.J., on July 11, Williams will help encourage fans to break the Guinness World Records for the most bubble gum bubbles blown at once.
“I want to be able to share what I learned and experienced throughout my dad’s battle with IPF in hopes that it will help others get the right information and help they need earlier and more easily than we did,” Williams says. “I know my dad would be proud to know that I’m turning our family’s difficult experience into a chance to help others.”