I’ve said several times since I started blogging in January of this year that my wife, Zoë, is the main reason why I’m able to attend the Golf Academy of America and pursue my dream. Today in Verbal Communication Skills, I delivered the second of four types of speeches I have to give throughout the semester, an informative speech about pulmonary fibrosis. I chose this topic not only to help spread the word about this deadly disease but also to pay tribute to my wife for what she’s doing for me. Here is a portion of the speech:
The American Lung Association defines pulmonary fibrosis (PF) as a disease marked by scarring in the lungs. Tissue deep in the lungs becomes thick, stiff, and scarred. The scarring is called fibrosis. As the lung tissue becomes scarred, it interferes with a person’s ability to breathe. What was once a commonly misdiagnosed and widely misunderstood killer is now becoming increasingly more common. A PR Newswire story in September of 2012 reported that 48,000 people worldwide are diagnosed with pulmonary fibrosis each year. Forty-thousand people die. That’s the same number of people who are lost to breast cancer on an annual basis.
So why have so many people never heard of pulmonary fibrosis? Breast cancer has a face. The victims are our mothers, sisters, aunts, and cousins. Pulmonary fibrosis awareness is still a work in progress. The most famous person to die of pulmonary fibrosis is probably actor Marlon Brando. If pulmonary fibrosis kills as many people each year as breast cancer, how come people have never heard of it, and what’s being done about it?
As many of you know, I just got married in the fall of last year. Sadly, I will never get to know my father-in-law. Steve Dirks was diagnosed with pulmonary fibrosis in June of 2007. He died six weeks later at the age of 62. Everyone says he was a great man, and I’m sure he was. His daughter Zoë, who’s now my wife, is part of the movement to better diagnose, categorize, and identify treatments for those with pulmonary fibrosis. She works for the Pulmonary Fibrosis Foundation or PFF, a non-profit patient advocacy organization, based in Chicago.
The mission of the Pulmonary Fibrosis Foundation is simple – to serve as the trusted resource for the pulmonary fibrosis community by raising awareness, providing disease education, and funding research of the disease. It was founded in 2000 by brothers Albert Rose and Michael Rosenzweig, who were dedicated to identifying effective treatments and assisting those living with the disease after their sister Claire was diagnosed. In a strange twist of fate, both brothers were also diagnosed with pulmonary fibrosis and died a short time later. It’s rare for three members of the same family to be diagnosed with pulmonary fibrosis.
The signature programs of the PFF include: A Care Center Network to standardize treatment and care for those living with PF; a Patient Registry to provide a forum through which people can freely collect and store patient data; and a biennial Summit, a collaborative medical conference unique to the medical industry because it brings doctors, researchers, patients, and caregivers together in the same setting.
I encourage (or challenge) you to go online and get involved at pulmonaryfibrosis.org. There, you can learn how you can make a difference.