In March 2010, Jeffery Peters and his wife, Michele, left the doctor's office. They had just been given a diagnosis of Idiopathic Pulmonary Fibrosis (IPF). They walked to their car without saying a word. Once inside the car, Michele turned to Jeffery and said, "Let's put this in perspective, thank God it isn't lung cancer. It's only fibrosis."
Just over five years later, on May 19, 2015, Jeffery Peters would lose his hard fought battle with IPF. From leaving the doctor's office that day never having heard of pulmonary fibrosis (PF) or even knowing what it was, they began a journey of learning about the disease, advocating for themselves and the PF community, and raising awareness of the disease that would take Jeffery away from those who loved him far too soon.
At the time of Jeffery's diagnosis, no one he knew had ever heard of IPF just like so many other people not personally touched by this devastating disease. The resources found online at the time gave a very grim prognosis: terminal condition, no treatment options and life expectancy of three to five years after diagnosis.
Pulmonary fibrosis literally means lung scarring. The scarring can be caused by many factors including environmental and occupational. But when a known cause cannot be found, it is termed idiopathic. The disease is often misdiagnosed and can take upwards of two years to receive an accurate diagnosis. The symptoms are often very vague: typically a patient has a dry cough and shortness of breath upon exertion. Certainly nothing that makes someone run off to their doctor. And by the time many people have a correct diagnosis, the scarring has become advanced because the disease has progressed unchecked for several years.
While few people have heard of IPF and it is considered a rare disease, it claims as many lives as breast cancer each year. Approximately 50,000 new cases are diagnosed every year and more than 40,000 people in the U.S. die from IPF every year.
Every 13 minutes, someone loses their battle with IPF
Jeffery and Michele needed to do more and learn more about this little known disease. They started Team Jeffery for PF and become very involved with the Pulmonary Fibrosis Foundation. They held fundraisers and participated in several Hike for Lung Health walks. To date, Team Jeffery for PF has raised over $30,000. Both Jeffery and Michele became PFF Ambassadors in 2014 sharing their personal stories about their individual journeys with PF as a patient and a caregiver. This disease affects not only the patient, but their entire family. In 2014, they became support leaders and have participated in supporting the local PF community in any way they could.
Jeffery wrote in his PFF Ambassador story, "As you can imagine, the daily struggle for air, paired with the knowledge that it will only get worse, took a devastating toll on me." With no treatment options at the time, Jeffery participated in several clinical trials, hoping that if it provided ineffective for him, it might help other patients in the future.
Michele continues to be an advocate and works to raise awareness of PF. She is often asked why she continues to be so involved after losing Jeffery. Her short answer is, because we are not there yet. "I want to keep on living my life, and maybe something will come along--we can all hope," said Jeffery in his Ambassador story. Michele continues the important work to raise awareness in Jeffery's memory. Michele and Team Jeffery for PF are determined to not give up until we are all there because we imagine a world without pulmonary fibrosis.
Just over five years later, on May 19, 2015, Jeffery Peters would lose his hard fought battle with IPF. From leaving the doctor's office that day never having heard of pulmonary fibrosis (PF) or even knowing what it was, they began a journey of learning about the disease, advocating for themselves and the PF community, and raising awareness of the disease that would take Jeffery away from those who loved him far too soon.
At the time of Jeffery's diagnosis, no one he knew had ever heard of IPF just like so many other people not personally touched by this devastating disease. The resources found online at the time gave a very grim prognosis: terminal condition, no treatment options and life expectancy of three to five years after diagnosis.
Pulmonary fibrosis literally means lung scarring. The scarring can be caused by many factors including environmental and occupational. But when a known cause cannot be found, it is termed idiopathic. The disease is often misdiagnosed and can take upwards of two years to receive an accurate diagnosis. The symptoms are often very vague: typically a patient has a dry cough and shortness of breath upon exertion. Certainly nothing that makes someone run off to their doctor. And by the time many people have a correct diagnosis, the scarring has become advanced because the disease has progressed unchecked for several years.
While few people have heard of IPF and it is considered a rare disease, it claims as many lives as breast cancer each year. Approximately 50,000 new cases are diagnosed every year and more than 40,000 people in the U.S. die from IPF every year.
Every 13 minutes, someone loses their battle with IPF
Jeffery and Michele needed to do more and learn more about this little known disease. They started Team Jeffery for PF and become very involved with the Pulmonary Fibrosis Foundation. They held fundraisers and participated in several Hike for Lung Health walks. To date, Team Jeffery for PF has raised over $30,000. Both Jeffery and Michele became PFF Ambassadors in 2014 sharing their personal stories about their individual journeys with PF as a patient and a caregiver. This disease affects not only the patient, but their entire family. In 2014, they became support leaders and have participated in supporting the local PF community in any way they could.
Jeffery wrote in his PFF Ambassador story, "As you can imagine, the daily struggle for air, paired with the knowledge that it will only get worse, took a devastating toll on me." With no treatment options at the time, Jeffery participated in several clinical trials, hoping that if it provided ineffective for him, it might help other patients in the future.
Michele continues to be an advocate and works to raise awareness of PF. She is often asked why she continues to be so involved after losing Jeffery. Her short answer is, because we are not there yet. "I want to keep on living my life, and maybe something will come along--we can all hope," said Jeffery in his Ambassador story. Michele continues the important work to raise awareness in Jeffery's memory. Michele and Team Jeffery for PF are determined to not give up until we are all there because we imagine a world without pulmonary fibrosis.