WASHINGTON, June 12, 2014 (GLOBE NEWSWIRE) -- Douglas Nance is happy to be alive this Father's Day and every other day for that matter. The third generation Washington, D.C. native will celebrate the holiday with his wife and four children this weekend, six years after being diagnosed with Pulmonary Fibrosis (PF) and basically being given a death sentence. His only chance for long-term survival is being placed on a lung transplant list for the incurable lung disease.
Nance, 59, suffers from a disease that causes relentless and progressive scarring in the lungs and one that most pulmonary doctors will tell you is a fate worse than cancer. There is no FDA approved treatment and no known way to stop the scarring process of the disease that affects a known 200,000 Americans. Most experts believe the number of people living with the disease is actually much higher than has been reported to date. The first two drugs may be approved for the disease later this year in the shadow of many failed drug trials over the last dozen or so years.
Most patients die within three years of diagnosis so the fact that Nance is still here to celebrate this weekend with his family is no small feat.
Things could change with Nance's disease at literally any moment and he knows it. The unpredictability of the disease and the severity and speed at which it attacks makes Nance and others with PF more likely to rank high on the transplant waiting list. Sadly, less than one percent of patients who suffer from the disease can hope to survive it via transplant.
Nance shares his PF experience with all who will listen and dedicates time to advocating on and off Capitol Hill for PF patients and their families with the Coalition for Pulmonary Fibrosis (CPF).
"I am a fortunate man to still have a productive life and to be able to speak out about this horrible disease while supporting the Coalition for Pulmonary Fibrosis (CPF)' efforts to find treatments and a cure," said Douglas Nance.
Nance's family is also actively spreading the word about PF. His wife, Martina, is a member of the CPF's Daughters of PF program, an effort to give a voice to often debilitated or deceased patients by working with family members and survivors to increase awareness. His daughters Danielle and Noelle and daughter-in-law, Reneika help out, as well as his sons, Philip and Edward.
"As my husband's caregiver, I am so grateful for the support and the love of our CPF family, that inspires me to spread the word about PF to everyone in person I meet and through social media," said Martina Nance.
Nance, a minister, doesn't look like he's sick and in fact, looks more like a line backer than a man whose life is at risk of being cut short by suffocation.
His attitude is surprisingly positive and upbeat and he works hard to stay in the best physical shape possible so that when the time is right for transplant, he'll be ready. Ironically, patients have to be sick enough to need a transplant but not too sick to get it.
"Douglas has always had such a positive outlook and he's made such an impact on lawmakers on Capitol Hill in getting them to support the cause," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis. "We are so grateful to have him still alongside us fighting for patients and families."
The Chair of the Daughters of PF program is Actress Rose McGowan who lost her father to PF. Anyone can join the free Daughters of PF program, just for the asking by emailing the CPF at daughters@coalitionforpf.org or joining the Daughters of PF Facebook page (https://www.facebook.com/pages/Daughters-of-Pulmonary-Fibrosis/186949891389411). Every new member helps the CPF expand the chorus of voices working for change.
The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit http://www.coalitionforpf.org or visit us on Facebook or Twitter.
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 128,000 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 501C(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 CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 28,000 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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