CULVER CITY, CALIF., Oct. 23, 2013 (GLOBE NEWSWIRE) -- Faye MacInnis won the fight against breast cancer, and is included amongst its survivors today, several months following her last cancer treatment. Her husband, Phil MacInnis, was not so lucky. The two, married for 16 years, were diagnosed within weeks of each other, she with breast cancer and he with a deadly lung disease that most people have never heard of - Pulmonary Fibrosis (PF). PF, ironically, is a disease that claims as many lives each year as breast cancer.
PF is progressive and causes deadly scarring in the lungs that renders the patient breathless and debilitated. Unlike breast cancer PF has no FDA approved therapies and no cure. Scientists don't know yet what causes the disease that affects 200,000 Americans. The average lifespan, post diagnosis, is less than three years.
In a matter of 10 months Phil lost his battle to the little known disease leaving his wife and other family members shocked and numb.
"When I was diagnosed with breast cancer I had a full team of doctors and other professionals rushing to my side. They provided me with the information and tools necessary to cope with and deal with my diagnosis including what to do when," said Faye MacInnis. "My diagnosis was met with hope and Phil's was not."
Phil was seen by two different centers in Pennsylvania for possible lung transplant that is the only known "treatment" to survive the disease. Most PF patients don't qualify for transplant and don't get referred for transplant in time making it an unlikely option for the majority of PF patients.
Phil's condition exacerbated or worsened quickly while being evaluated for the surgery and he died before he could be listed for transplant.
Faye says she eventually found out about the Coalition for Pulmonary Fibrosis (CPF) but wishes she'd known about the organization as soon as Phil was diagnosed. "If I could have accessed their resources sooner it could have made a difference; instead my husband slowly began to suffocate to death while the family frantically researched for any option that might keep him with us longer. I may have survived breast cancer, but while holding Phil in my arms as he died at 3:22 a. m. on March 27, 2013, a large part of me died anyway." she said.
"We hear stories similar to Phil and Faye's much too often," said Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis. "It is part of our mission to make sure every doctor and other medical professional knows about this disease so that every patient can get the resources and help they need as quickly as possible."
Now, seven months after losing her husband and a year after surviving breast cancer, Faye is embarking on an effort to educate physicians and other medical professionals in her area of Delaware and beyond. She plans to go door to door to medical offices educating them on PF armed with materials from the CPF and spreading the word about the resources available for patients and family members faced with PF.
"Why in this day and time in medicine did I live and Phil die?" Faye MacInnis asked. "The system failed us and the science for PF wasn't advanced enough to save him."
To learn more about PF, visit www.coalitionforpf.org .
About Pulmonary Fibrosis (PF) Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis – and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 200,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The 'PF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 27,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
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Teresa Barnes Coalition for Pulmonary Fibrosis 303-521-4080
