National Pulmonary Fibrosis Awareness Week

Screen shot 2009-09-27 at 1.34.48 AMI want to call attention to this week because I had idiopathic pulmonary fibrosis, a generally fatal disease. June 15, 2004 I received a double lung transplant that saved my life.

“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).”

September 14-21 is designated as National Pulmonary Fibrosis Week by the Coalition for Pulmonary Fibrosis, a national advocacy seeking to accelerate research efforts to find a cure for pulmonary fibrosis.  They are promoting the passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA H. R. 1079) that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.

“The urgency of the campaign is that the disparity of federal investment in PF compared to other diseases that realize far fewer deaths and have longer life expectancies, means a far longer wait for a possible cure.  The wait for funding is costing 40,000 lives each year, the same number of lives lost to breast cancer,” said CPF Chief Executive Officer.

Any efforts to encourage members on Capitol Hill to pass this legislation would be appreciated.  For more information see http://www.coalitionforpf.org/ or call 888-222-8541.

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2 thoughts on “National Pulmonary Fibrosis Awareness Week

  1. Great article. Awareness of this disease is increasing and it is important to educate the public. Thank you for your efforts.
    Christine Barnes RRT
    Pulmonary rehab coordinator
    St. John’s Regional Medical Center

  2. Thanks for helping to spread the word about PF. I was privileged to be in Washington DC for PF Awareness Week, and for lobbying on behalf of HR 1079, The Pulmonary Fibrosis Research Awareness Act. I am happy to report (on 9/22) that HR 1079 has gained 9 new Congressional Co-Sponsors in less than a week! PLEASE write to your Representative and urge him or her to become a co-sponsor of HR 1079!