Yankees legend Bernie Williams pays tribute to ‘superhero’ dad with ILD initiative

Former New York Yankees center fielder Bernie Williams is sharing resources for patients with interstitial lung disease as a tribute to his late father, who lost his battle with idiopathic pulmonary fibrosis in 2001.

Williams — a five-time MLB All-Star, four-time World Series champion and 2009 Latin Grammy nominee — began his advocacy in response to the diagnostic delays and misdiagnoses his father, along with many other patients with ILD, faced while living with idiopathic pulmonary fibrosis. It was due to these frustrations that Williams became involved with the Breathless campaign in 2017, which evolved in 2022 into the Tune In To Lung Health initiative, created in partnership with Boehringer Ingelheim.

“My dad was my superhero,” Williams said in an interview. “He taught me how to play guitar and how to play music. He got me started in sports and taught me how to play baseball. He was there for us 24/7. He was so strong and full of life, so it was especially tragic watching him dwindle away to nothing and become a ghost.”

Healio sat down with Williams to discuss his family’s journey with idiopathic pulmonary fibrosis, the importance of a support system for both patients and caregivers, and the power of music for improving the lives of patients with this condition.

Healio: What was your father’s experience with idiopathic pulmonary fibrosis? Were there misdiagnoses or a delayed diagnosis along the way?

Williams: My father was misdiagnosed for 5 years, from the time we really started noticing symptoms until we received the right diagnosis in Puerto Rico. It was a very frustrating experience.

Healio: Why did he receive so many misdiagnoses?

Williams: He had symptoms that could be attributed to other conditions like a cold or flu, bronchitis or pneumonia — you name it. We got the whole gamut of different opinions. The difference is that all of those conditions are treatable. There is a light at the end of the tunnel for those patients, but we were not seeing that light. We were watching our dad getting worse. We had no idea that we were not dealing with one of those conditions; we were dealing with idiopathic pulmonary fibrosis, which is something that was completely new to us.

Healio: What was the impact of this diagnostic delay?

Williams: Even after we got the right diagnosis, it was even more frustrating to know that all the time we spent treating those other conditions took time away from when he could have been receiving more effective treatment. It may have enhanced his quality of life or maybe he would have had a couple more years.

Healio: What was your response to this diagnostic journey?

Williams: My initial reaction was that I wanted to help other people get the right information, so they do not have to ramble from doctor to doctor like we did. That was the beginning of the Breathless campaign.

We wanted to share information about ILD and idiopathic pulmonary fibrosis. That eventually evolved into the Tune In To Lung Health campaign, which is an enhanced awareness initiative to spread information about the power of breathing and music to help with these conditions.

Healio: What did you learn about ILD symptom recognition from your experiences that you wanted to spread in these campaigns?

Williams: The first thing I would like to tell people is not to give up. If you are not satisfied with the diagnosis or treatment, and things are not improving or you feel like you aren’t getting the right information, you should keep looking until you have the right answer.

Having a positive disposition and outlook is also essential for dealing with these conditions. It is also helpful to have a support system. It took all of us together to get through that process. My dad relied on us.

Healio: What are some ways rheumatologists can help caregivers and patients with ILD and idiopathic pulmonary fibrosis?

Williams: For caregivers, you have to take care of yourself first. You have to be at your best psychologically and physically to take care of these individuals.

For the physicians, I understand that they try to treat the symptoms or conditions they can treat, whether it is asthma, pneumonia, bronchitis or another such condition, but I would also encourage them to keep ILD and idiopathic pulmonary fibrosis top of mind for individuals exhibiting these symptoms.

Healio: Both breathing and music are mentioned as possible approaches to the management of ILD found in the Tune In To Lung Health initiative literature. How might these approaches be effective for these patients?

Williams: One of the cool things about Tune In To Lung Health is that we offer education and resources about this disease, but we also have information about breathing exercises from professional vocal coach Eric Vetro. There are also playlists for patients to listen to that aim to sooth, motivate and inspire.

Music and breathing techniques have proven to be very effective ways to enhance the quality of life of patients from both a physical and psychological standpoint. We know about the healing power of music for patients dealing with this circumstance. It can improve anxiety, depression, fatigue, whatever people are going through mentally.

Healio: Could you talk about your father and what all this means to you personally?

Williams: My father passed in 2001, so the purpose of this initiative is to prevent people from going through the journey we went through. We want to help other people. My dad was my superhero. He taught me how to play guitar and how to play music. He got me started in sports and taught me how to play baseball. He was there for us 24/7. He was so strong and full of life, so it was especially tragic watching him dwindle away to nothing and become a ghost.

It fills me with joy to see that by being an advocate for this disease, we can help prevent other families from going through what we went through. This initiative is a tribute to my father.

For more information:

Tune In To Lung Health: http://www.tuneintolunghealth.com/